Peggy's Blog

2011-05-11T13:52:00.000-07:00

ME/CFS Demo May 10, 2011 -- Dept of Health and Human Services, Washington DC

Contact: Rivka (at) ThatTakesOvaries (dot) org

On May 10, 2011, 6 individuals with ME/CFS, each sick and disabled from 9 to 21 years, demonstrated in front of the U.S. Department of Health and Human Services (HHS), 200 Independence Ave, S.W., Capitol Hill, Washington D.C. They carried with them just one sign, a 25 foot banner that read:

"Obama, Sebelius, HHS: Shame on you for abandoning 1 million sick and disabled Americans with ME/CFS and XMRV (Chronic Fatigue Syndrome and a newly discovered retrovirus). Clinical trials now!"

The representatives from the ME/CFS community were Kitty Lorenz, Karen Ravitz, Sharon Stapleton, Kat Stephens, a patient from New England, and the demo organizer, Rivka Solomon. They ranged from 21 to 70 years old and came from Connecticut, Massachusetts, North Carolina, Texas and Pennsylvania.

Around 2:15 pm, the demonstrators unfurled their banner in front of HHS's imposingly large building. They stood by the side of the street, thinking they were on what must constitute the public sidewalk, where, in most cases, people are allowed to partake in their civil rights to protest without arrest. However, it was hard to tell where the sidewalk was, given the design and layout of HHS's plaza. But it was a good guess, as the very traffic-y and thus noisy street, Independence Ave, was just a few steps behind the protesters. They choose not to position themselves across the street, on the opposite side of Independence Ave. By choosing to stay on the same side of the street as the HHS building itself, they knew they were taking more of a risk, since this would attract more police attention. The police that circulate around the vicinity of HHS include the Capitol Hill Police, the Washington DC Metropolitan Police, Homeland Security and of course the security for HHS itself. (Just before they started their protest, a cluster of 12+ cops were seen across the street. Later it was learned they were there for *another* nearby demonstration regarding abortion).

The ME/CFS demonstrators began filming themselves holding the banner and reading aloud a statement focusing on the plight of people living with ME/CFS. The statement included demands -- next steps they hoped the government would take. (Statement text found below.)

Within seconds, HHS Security came out of the building. At their peak, there were 7 members of HHS Security standing around watching the protest -- but they never approached the demonstrators. Instead they stood back about 50 feet, allowed the proceedings to continue until the protesters deemed their work done (i.e. the shooting of the video), a total of about 15 minutes.

After the shooting, the demo organizer, Rivka, walked up to the first tier of HHS Security, the men who had been closest, to thank them for allowing the protest and videotaping to go on uninterrupted. The one plain clothed security official present in that tier (apparently plain clothed equals higher up in authority) grumbled something, and then he and all the other (uniformed) men pointed behind them to two women standing further away. Assuming they were the bosses, Rivka approached the two women and thanked them, too. One was a security officer in uniform, the other was plain clothed, and it was she who was head of security for HHS. The conversation went something like this:

Rivka: Thank you for letting us to protest here.

Head of HHS Security: (grumbling, shaking head, angry)

Rivka: It was legal, right? We were on the sidewalk.

Head of HHS Security: No. No --

Rivka: (interrupting) But I spent last week calling the Capitol Hill Police, Washington DC Metropolitan Police and Homeland Security, trying to find out who has jurisdiction over the sidewalk in front of HHS --

Head of HHS Security: (talking at the same time) No. No. No. We have jurisdiction.

Rivka: (interrupting) And I talked to Commander xxxx from Homeland Security -- did he call you and tell you about us?

Head of HHS Security: No, he did not call.

Rivka: He said he wouldŠ? Or I thought he said he'd let everyone know. I mean, uuuh, are you head of HHS Security? He told me your name (drawing a blank) --

Head of HHS Security: Yes, I am xxxx xxxx.

Rivka: (nervous, but realizing that actions speak louder than words, and they *had* allowed the demo to take place) -- and Homeland Security Commander xxxx said the Washington DC Metropolitan Police had jurisdiction over the sidewalk, but that we'd --

Head of HHS Security: (angry, shaking head) No, if you had been on the other side of Independence Ave, that would have been legal.

Rivka: -- that we'd be fine protesting on the sidewalk as long as we did not do anything too outrageous.

Head of HHS Security: Not here. You need a permit here.

Rivka: Oh. Well, we really appreciate it. We came from very far away --

Head of HHS Security: (still shaking her head, but maybe, slightly, warming a bit?) I know.

Rivka: -- and we're very sick. Will pay a price for doing this demonstration. Could be bedridden a long time after thisŠ

Head of HHS Security: I know, we had to put out cots for those at the meeting. [She meant CFSAC, happening inside HHS that day.]

Rivka: Right. Exactly. Well, uh, thank you again, we appreciate it.

It was clear she had cut us some slack by allowing us to demonstrate uninterrupted and without a permit. Rivka walked back to the protesters packing up, then did an about-face and returned to hand the Head of HHS Security the protesters' informational one-pager (same as what was spoken into the video), asking her to give a copy to Sebelius, and adding, "Could you please tell Secretary Sebelius that this happened, that we were here today?"

"Oh, she'll be hearing all about this, all right."

BINGO! SUCCESS.

Goal #1 Mission Accomplished: Put Sebelius on notice that she is being impatiently watched by patients and their families. After years of her ignoring the CFSAC recommendations, after her refusals to meet with representatives from the ME/CFS community, she will now most definitely hear (from the head of her own security team) that we exist, that we were on her home turf, unfurling a 25 foot banner, demanding attention, respect, action.

Goal #2 of this demo: Inspire ME/CFS patients to make their voices heard in mini protests everywhere; to not wait for that elusive big demo to be organized by someone else, but to instead (for those who are able) get out in public and just do their own mini-demos around the U.S. and globe. Goal #2 will be accomplished, hopefully, by folks viewing this video of the HHS May 10th demo.

A hearty "Thank you, you were amazing," to the HHS protesters. They were brave, ready for action, fun and quite photogenic individuals who signed on just days before, or the day of, the demo. At least 3 of the 5 are MCWPA volunteers.

A special thank you to Robert, a wonderful demo-collaborator who knows how to make a great banner -- see banner-making video here:

The biggest thank you, however, is reserved for those who will take the next step, those who will hold their own mini-demos. It does make a difference, and it will have an impact. In the U.S., there are plenty of places to demonstrate:

- 10 HHS regional offices in Boston, MA; New York; Philadelphia, PA; Atlanta, GA; Chicago, IL; Dallas, TX; Kansas City, KS; Denver, CO; San Francisco, CA; Seattle, WA.
- 10 CDC satellite offices in Anchorage, AK; Cincinnati, OH; Fort Collins, CO; Hyattsville, MD; Morgantown, WV; Pittsburgh, PA; Research Triangle Park, NC; Puerto Rico; Spokane, WA; Washington, DC

Each of these sites is calling for a small group of 1 to 5+ ME/CFS patients and their families to stand in front, on the sidewalk, demanding to be heard -- even for just 15 minutes. Each head of security of each site will be mandated to let their national headquarters know that there was a person there that day, holding a sign in front, protesting HHS/CDC's policies on ME/CFS. Eventually, with enough mini-protests, this will impact policy.

If not you, who? If not now, when?

If anyone wants to use our already made banner for their demo, we'll ship it to you.

== Organizer's Costs Prepping for Demo (Money & Time) ==

1. Bolt of cloth (40 feet): $38.56
2. Red and black paint: $13.17
3. Paint brushes: $7.99
4. Popcorn for late night banner making: $3
5. Flight to Washington DC: $169.80
6. Taxi to Health and Human Services (HHS) demo: $31.10
7. Return trip Metro card: $3.40
8. Banner making: 2 wks.
9. Calls inquiring which police has jurisdiction over the sidewalk at HHS: 6 hrs.
10. Pitching to the media: 2 days. (Media that came: None).
11. Trying to get a 5 minute meeting with HHS's head of Public Affairs: 4 hours. (Minutes approved: None.)
12. Writing script/statement for the video; also served as the handout for the press (that did not come): Half a day.
13. Expected post-demo relapse (based on previous post-demo relapses): 6 wks in/near bed.
14. Influencing the U.S. government's ME/CFS policies and funding allocations: Priceless!

== Statement Read Aloud at Demo (and handed to HHS staff) ==

Why are we protesting at the Dept of Health and Human Services?
Advocating for people with ME/CFS -- Chronic Fatigue Syndrome

o We are Americans who have spent much of the past 10-30 years bedridden and homebound with a severe disability that was given a belittling name by our government, Chronic Fatigue Syndrome (CFS).

o Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is the full name of our illness.

o It is an "invisible disability": We often look fine, but are severly disabled, many of us are unable to leave bed.

o This belitting name, Chronic Fatigue Syndrome, sounds like we are "just tired" and thus it does not reflect the seriousness of our disease. But it certainly makes it easy for our government, medical community and media to dismiss and ignore those who suffer with it.

o However, if you have ME/CFS it is not easy to ignore. It stops your life. We lose our ability to work, attend school or have a social life. Many of us are bedridden and using wheelchairs. Some of us have died early from leukemia, other cancers or health complications.

o There are 1-4 million Americans with this illness --17 million people worldwide.

o ME/CFS drains $18 billion to $23 billion annually from the US economy.

o The US government, media and medical communities have delegitimized the illness and falsely psychologized patients.

o This has resulted in very little federal money spent on research to discover the cause, treatments or cure of this illness.

o Then, in 2009, there was a research breakthrough, and scientists found a retrovirus (called XMRV) linked to CFS. A retrovirus is a virus that never goes away (like HIV).

o Still, the FDA has not banned people with ME/CFS from donating blood (the Red Cross has).

o Today, we are here protesting to demand that Obama and Sebelius (Dept of HHS):

- Protect the nation's blood supply: Ban peole with ME/CFS from donating blood.
- Fund research via Centers of Excellence just for this illness, including the Whittemore Peterson Institute (the lab that discovered XMRV's link to CFS).
- Fund fast-track clinical trials for treatments, medications.
- Act on the recommendations of CFSAC (the Chronic Fatigue Syndrome's Advisory Committee). They have ignored these recommendations for years, while patients and their families suffer with a devastating illness.

2010-11-12T21:08:00.000-08:00

ANNOUNCING THE EXIT PROJECT!

As a follow-up for my call to action (see last post) please check out The Exit Project! Do you want to do simple activism right now that you can do from your home or bed (or in the streets)? Then submit to The Groundswell Campaign (guidelines below) -- and please volunteer to help by emailing via The Exit Project's website: www.theexitproject.org

Let's make it global -- public actions are encouraged too!

__________________________________________________

GROUNDSWELL Campaign
An action of The Exit Project (Eradicate XMRV Infection Today).

Who: Many ME/CFS/XMRV patients wonder what they can do to participate in activism (especially those who are homebound or bedbound). If you’re got a camera (or video camera), and the ability to write a paragraph, you can do this project without much effort, and become part of a quilt of images to engender a groundswell of support for ME/CFS/XMRV. We invite all patients who are “grounded” by ME/CFS/XMRV (in any way) and who want to create a groundswell of support and awareness. If you're able to take it to the streets and make a more public display, even better! The most important thing is to join in.

Why: Few people really understand how wretched this illness can get, and outsiders rarely see what homebound, bedridden, or very ill patients deal with. What succeeded in AIDS activism was depicting AIDS in all of its brutality. Until people see what it really means to be “grounded” for months, years, decades, they simply don’t have a reason to care or get involved. This is what The Groundswell Campaign is about. We want to create a groundswell of support and show what grounded patients are capable of! We also want to show how many human lives are "X"d out by this illness (and do something to represent the fact that XMRV has infiltrated the population at alarming rates -- but you don't need to be XMRV-positive to submit).

What to Submit: Take pictures (or video) of yourself in a horizontal position: lying flat, curled up in the fetal position, slumped in a bathtub, on a sidewalk in front of the FDA, on the floor of a subway train, sprawled across seats in a train station, on your front porch, as part of a public demonstration in which you read The Exit Project's list of demands and lie in front of the capital on top of a big chalk "X," etc. The main thing is that you’re not upright. If you can get outdoors, especially in a public place, feel free to lie in the middle of a crowd at the mall, on the grass, in the water, whatever works for you – or maybe on the edge of an outdoor wedding or event, where you are clearly an outsider, grounded, and viewers can see people living their lives in the distance. You can take the pic on a hospital gurney or in front of a state capital building. It is fine to include others in the picture (your family members, partner, strangers, etc.) who can be upright. Each picture should include a visible letter “X” for XMRV, whether you have XMRV or not – you can put it on your clothes, write it on your skin, make it out of pill bottles, find a naturally occurring X somewhere in your house, draw it in the sand, etc. This will help reinforce the iconography of our campaign so it is easily recognizable, and reinforce the idea that anyone can get X’d out by this illness, and anyone can get XMRV. The more pictures we can get with visible landmarks, the better (for example, if you can take it near a political landmark or in front of a hospital or blood bank, or by a well-known tourist spot where you live). Once you take your pictures, choose your favorite shot, to go with your written paragraph. Follow the instructions below to write your paragraph. You can also submit a short video using the same instructions, and incorporating the X, in which someone (you or another person) is reading the text of your paragraph. It’s that simple! If you want to do this with a group of people, you can each write a paragraph, and post a picture with each paragraph or one picture for the whole group.

What to Do Next: After you have taken your pic or made your short video, write a paragraph on this topic: How has your life been grounded by ME/CFS (and XMRV if applicable)? What were you able to do before you got sick that you can’t do now? What is one comment you'd like to make about your picture and what it represents? What would a groundswell of support mean for you? Or, if you do better working free form, simply produce a paragraph about what it means to be grounded, what your picture signifies to you, and what you would ask of a groundswell of support. Creativity is encouraged! But please keep it short and sweet -- this is for immediate impact, not a medical history! Let the pictures tell most of the story and imagine hundreds of them lined up, creating a groundswell. Ask your friends to do it too. We need bodies!

If you are doing a video, read your paragraph or overlay the text onto the video.

Just don't forget the two rules: have something visible in the shape of an X, and be horizontal.

Where to Send: Post any videos on YouTube, then send videos or photos with text to: theexitproject@gmail.com

and also to Anthony Fauci at: afauci@niaid.nih.gov
And Kathleen Sebelius at: Kathleen.Sebelius@hhs.gov

Also, if you can include more names, please send to any or all of these people as well:

Margaret Hamburg at: margaret.hamburg@fda.hhs.gov
Howard K. Koh, M.D.: ASH@hhs.gov
Director Francis Collins: collinsf@od.nih.gov

2010-10-08T15:32:00.000-07:00

The best offense is a good offense: what we need to learn from AIDS

According to the CFS Untied blog, the CFIDS Association of America just proudly touted an “advocacy” style for ME/CFS that consists of “using one’s inside voice”:

The president of the CFIDS Association of America said that she heard the announcer on National Public Radio state that "we use our inside voices to bring you the news." She likened that to the "inside voice" of the CAA as they pursue their activities of stimulating research, reporting on the success of their grantees, and sharing information about upcoming events and important publications.

A quarter of a decade into the crippling epidemic of ME/CFS, we have yet to learn what AIDS activists taught us about inside voices or, more generally, about interiority from the perspective of men who had come out of the closet only to be faced with social ostracism and Kaposi’s sarcoma. Those activists didn’t use inside voices unless they were watching a live performance of Angels in America. They shouted, marched, and threw blood. And this is what worked.

Because AIDS struck the gay community with such ferocity, the first line political responders to AIDS were heavily invested in the gay community. So gay culture used its own ammunition: the arts, style, radicalism, intellect, and rooted bodily awareness. This launched an activism that was uniquely queer-ified but opened its arms to all affected groups. The gay male community knew how to finger-snap back at homophobia, and took the weapon that had always been used against them -- bodily shame and blame -- and threw it against their oppressors. They reappropriated derogatory language and smear tactics, so that society could see the smallness of its bigotry -- and conversely, where they faced bigotry or stereotyping, they used it. When the New York Times ran a photo caption about the first ACT-UP action in 1987 that read “Homosexuals arrested at AIDS drug protest,” it likely helped the cause by inciting homophobia: gay men were bleeding their gay disease right there in the streets (!), and all they wanted were fast-tracked drugs (!).

When faced with homophobic religious intolerance, these groups came up with a brilliant re-wording of slogans -- like putting the phrase “right to life” over the image of a condom, until justice-seeking, open-minded religious figures joined them.

A sort of panic ensued from such ACT-Up tactics, the kind of cultural panic that emerges when any ghettoized group invades an exclusionary space. For a brief time, my guess is that the response of government AIDS officials came right out of their own homophobia: they wanted to do damage control, and quickly, to cram the gay plague back into a hidden arena. Not allowing people to be comfortable with the status quo -- in fact, forcing the discomfort of AIDS onto the American public -- was what won the war for AIDS activists.

ACT-UP realized their victory came in part from culture’s phobic response -- and they capitalized on it, brazenly, exposed it and called it out. They went into every space their queer-infused politic would be unwelcome: Wall Street, Trump Towers, Sloan-Kettering, Northwest Airlines, St. Patrick’s Cathedral, the FDA. They pulled in non-gay members of other disenfranchised groups who were being hit by AIDS and ignored, such as prisoners, IV drug users, people of color. These tactics resulted in fast-tracking of drugs, safer doses of AZT, and cost reductions of overpriced AIDS meds. They never let up on the tone of emergency.

By using an “inside voice” ME/CFS patients and activists have done nothing but reinforce the power of those keeping us down. We too have been faced with bigotry -- plenty of it -- and derogatory stereotyping. Look at this cartoon, for example -- we’ve seen similar stereotypes in the media a hundred times, and it’s a disgrace:

Patients who display appropriate entitlement or speak to the tone of emergency, such as Hillary Johnson or Dr. Jamie Deckoff-Jones, are still sometimes treated as an angry fringe.

Dr. Paul Cheney’s recent newsletter stated -- in seeming response to vocal patient Dr. Deckoff-Jones’ blog about her XMRV treatment with antiretroviral drugs -- that we (patients) should not trust anecdotal stories of treatment with such drugs, as they could be reflecting spontaneous cures. While it is true that many anecdote-reported “cures” of ME/CFS fall flat, Dr. Cheney (one of our finest) is dismissing a Harvard-educated doctor’s capacity to document the progress of herself and her daughter. Maybe it was a Harvard education that allowed Dr. Deckoff-Jones the appropriate tone of entitlement she is encouraging of other patients, when she states repeatedly that patients should have the right to make a choice about drug treatment without paternalism standing in the way. She's right, and she's an example of what one person can do.

This is not just about numbers: a lot of shit can be shaken when each participant chooses a bullhorn, a die-in, even a quilting needle instead of an “inside voice.” Here's an article about ACT-UP actions at my small college, Oberlin, when I was a student there:

Tory Dent said something profound with the title of her first book of poetry (written from the standpoint of an HIV-positive straight woman), What Silence Equals. AIDS politics had already figured out the literal meaning of silence (death), but Dent turned it into a more deeply philosophical concern. Silence equals a lot of things beyond death. There is a particular kind of silence that wends its way into the shocked dogs known as ME/CFS patients. While most of us are too disabled to do ACT-UP style activism, I have noticed that many patients also think such activism does not apply to them. “Wouldn’t it be more effective to simply hold a meeting?” a patient-activist asked me recently. I think we’ve held plenty of meetings and -- as thrilling as some of the challenging questions raised at those meetings have been -- they don’t replace the grit and gusto of ACT-UP style tactics. We have to claim our outsider status, and work with it.

Meetings miss the point entirely in most cases, as they show patients acting more healthy than they are. At 41 years old, after publishing three books, I am so cognitively impaired I resemble someone with AIDS neurocognitive dysfunction -- a reality that makes sense if one looks at Dr. Komaroff’s SPECT scans of the brains of people with ME/CFS and AIDS dementia (they look identical) -- and I have a hard time following a meeting. Plus I can't travel. I am bedridden almost all of the time. My life has been whittled down to an arrow-sharp emergency, and I’m not going to use my inside voice about it.

Many of us have been forced into solitude and extreme interiority. But there is another piece of this, the despair, and the idea that we can’t really shake up change. Maybe one had to live in that ground zero of San Francisco in the 80s or early 90s as I did to really appreciate how effective AIDS activist tactics were, and where they came from. As battle-weary as some activists were by the time I arrived in the city in 1992, AIDS was still as ubiquitous in San Francisco as coffee was about to become in Seattle. HAART had not come along yet and people were dying. There was no time to hide these realities of the flesh, and no time to be quiet.

Here’s an ad that the San Francisco AIDS Foundation took out in SF papers in 1992 and another SF AIDS Foundation poster from 1994 and: another.

This is how far even the more moderate AIDS organizations had gone, by the early 90s, beyond an “inside voice.”

And this piece by artist John Davis, from 1992, says it all about amplifying an inside voice: it depicts a nude wasting AIDS patient hiding his face from the camera.

In the Castro, the juxtaposition of life and death in the AIDS era was particularly cruel, because the men who looked so virile and green-drink-purified and gym-toned were window-shopping right alongside the men in wheelchairs with Kaposi’s sarcoma lesions and oxygen tanks. The Golden Gate bridge was constantly repainted a fiery red, and if one took a quick turn off of Castro onto Market Street, one could see the sewing machines in the windows of the Names Project (the AIDS quilt) inviting the same kind of fiery artistry against the fog -- all fog that obfuscated the bloody truth.

But even in a city where half of the gay men were then said to be HIV positive (I don’t know where that statistic came from, but heard it repeated more than once in San Francisco), the epidemic was also remarkably invisible at times. Yes, patients were wasting and dying with visible lesions, but before that they were the well-looking patients coming into the health food store where I briefly worked, flashing AIDS discount cards and buying weight gain powder. At that moment, they were not unlike a lot of ME/CFS patients, even in San Francisco.

It is not that they were not alone, and invisible, but that they spoke openly, honestly, and angrily about this truth, as described in this speech by Vito Russo in 1988: “Living with AIDS is like living through a war which is happening only for those people who happen to be in the trenches. Every time a shell explodes, you look around and you discover that you've lost more of your friends, but nobody else notices. It isn't happening to them. They're walking the streets as though we weren't living through some sort of nightmare. And only you can hear the screams of the people who are dying and their cries for help. No one else seems to be noticing.”

They made themselves visible.

The government tried to give AIDS a belittling misnomer, just as they did with “CFS,” when they called it gay-related immune deficiency (GRID). The acronym GRID seems to encode its secret purpose: to keep the gay plague cordoned off. “CFS,” in its own way, did the same thing: it created a tidy idea for a devastating, chaotic situation -- like a codependent wife trying to diffuse the alcoholic dervish she married through using his tactics of denial, minimizing, and blame.

AIDS patients responded with a savvy ability to seize what was given to them and flip the language around. If the government was going to call it a gay plague, then fine: gay men started the Gay Men’s Health Crisis which morphed into ACT-UP. They seized reductionistic language and twisted it around, with passion and anger. The world wanted to see dying gay men kept in a constrained, leper-colony-style grid: so they decided to “unleash power” and define their own crisis.

A quarter of a century into our epidemic, we still have newspapers shortening their headlines about this illness to “chronic fatigue.” This is degrading language, and we can't let it go unnoticed.

In the current flurry of articles about homophobic bullying and gay teen suicides, it’s important to consider that many of those men with AIDS had been bullied as teenagers, harassed, shamed, and beaten down (literally). Bullies use the same tactics of batterers, and of the CDC -- including “denial, minimizing, and blame” (a classic entry on the “power and control” wheel that describes patterns of domestic violence). The power of ACT-UP and other efforts of a besieged gay community came from the ability of afflicted gay men to recognize a bully and know what kind of bear they were up against. Most of them, sensing the bully was a bear who would try to shrink them down, acted big and rattled pans.

But ME/CFS patients have tended to get sucked into what domestic violence activists call the “cycle of violence,” believing the bullies’ lies that they will change -- lies like “Ampligen will be approved by the FDA soon!” and “the CDC will make a concerted effort to restore the misspent funds to further research around ME/CFS.” It’s time for the abuse cycle to stop. Lundy Bancroft wrote in his seminal book about abusers, Why Does He Do That?, “You cannot, I am sorry to say, get an abuser to work on himself by pleading, soothing, gently leading, getting friends to persuade him, or using any other nonconfrontational method. I have watched hundreds of women attempt such an approach without success. The way you can help him change is to demand that he do so, and settle for nothing less.”

The best way to end Stockholm Syndrome is to get the hell out of Stockholm, or Dodge, or the CDC’s bed.

ME/CFS activism has done far too much pleading, soothing, and gently leading. The bullies that dragged their feet around AIDS underestimated the power of gayness, expecting it to be more passive than it was. They had never been to the Castro, and had not met superhuman men who could lay hardwood floors, bench press a ridiculous amount, fuck like the ship was sinking, pick out the right paint colors, and dress to the nines. But it wasn’t just the gay men: it was artists, other queer folks, anarchists, and growing legions of sympathizers and infected parties. The AIDS movement was like a Harlem Renaissance of arts and culture exploding, and the CDC and NIH and FDA were completely unprepared. They had not really considered what would happen if gay men stopped being their hairdressers and turned their shears on FDA red tape. But this is exactly what happened.

And this was exactly the beauty of AIDS activism: it brought together hairdressers and quilters, junkies and mothers. People found creative ways to use whatever skills they had -- and ME/CFS patients can do this too, even if we can only lie still with a webcam trained on us.

We can’t believe it’s too late to start over, and have a movement that strong. We have to demand change and settle for nothing less.

One reason outsiders joined AIDS politics is that AIDS politics were radical, artistic, and cool. ME/CFS now has a retrovirus that starts with the letter X -- X like an LA punk band, X like the X Games, X like the eyes of the dead in a graphic novel -- and we have a chance to escape the hysterian-invoked stereotypes that have held us down for so long. We have to call this what it is, call it X Disease, call it XAND, and use that X like a medieval weapon.

Yes, we have been living an imposed dormancy for decades. This is our time to wake. I dare say that if Sophia Mirza’s mom can tell the story of her daughter’s death from ME/CFS when her daughter’s last months were spent in complete confinement, or if Laurel can present this testimony to the CFSAC while too ill to speak above a whisper, or if I can write this blog post after spending most of 2009 lying ten hours a day on a bathroom floor as far as I could drag myself from bed, unable to speak and in respiratory failure dying a horrible death, every patient and every family member of a patient can play a role in this struggle.

I want to see the recent email campaigns and other actions take off, but I also want to see a radical politic with a lot of new ideas that loudly speak the awful truth. I want to see patients spray-painting an X over themselves and doing living-death die-ins (Krylon H20 Latex spray paint has much lower VOCs) with signs that say “This living death is XMRV.” I want to see a tech savvy ME/CFS patient put up a virtual quilt video project, where one patient wears a green t-shirt with an X on it and another wears a red one and another wears a blue one as each of them tells a one-minute XMRV/ME/CFS story, and these screens are quilted together on one big web page.

Now AIDS has given us a road map for activism, and it has even given us Anthony Fauci, who Russo critiqued in his aforementioned speech by saying: “And we read on the front page of The New York Times last Saturday that Anthony Fauci now says that all sorts of promising drugs for treatment haven't even been tested in the last two years because he can't afford to hire the people to test them. We're supposed to be grateful that this story has appeared in the newspaper after two years. Nobody wonders why some reporter didn't dig up that story and print it 18 months ago, before Fauci got dragged before a Congressional hearing .”

It was at that moment in history that AIDS activists began screaming for drug trials -- not agreeing that they were supposed to be grateful for one damn story. It's discouraging to see ME/CFS patients get so excited about this "world class virus hunter" heading up the latest XMRV research when no drug trials are underway. If patients need something to light a fire under their activism, I suggest looking at the text of this ACT-UP flyer for their first organized action March 24, 1987 on Wall Street, New York City -- it mentions Ampligen. Yes, that’s right, Ampligen -- the drug found to have efficacy against XMRV that ME/CFS patients can't get except through limited cost-recovery trials -- the drug kept from ME/CFS patients by FDA foot-dragging while no other drugs have been approved by the FDA for this disabling and potentially contagious retrovirus.

So how well have our tactics worked so far?

__________________________________________________________________
Flyer for the First ACT-UP Action on March 24, 1987, Wall Street, New York City
__________________________________________________________________

NO MORE BUSINESS AS USUAL!

Come to Wall Street in front of Trinity Church
at 7AM Tuesday March 24 for a

MASSIVE AIDS
DEMONSTRATION

To demand the following

1. Immediate release by the Federal Food & Drug Administration of drugs that might help save our lives.
These drugs include: Ribavirin (ICN Pharmaceuticals); Ampligen (HMR Research Co.); Glucan (Tulane University School of Medicine); DTC (Merieux); DDC (Hoffman-LaRoche); AS 101 (National Patent Development Corp.); MTP-PE (Ciba-Geigy); AL 721 (Praxis Pharmaceuticals).

2. Immediate abolishment of cruel double-blind studies wherein some get the new drugs and some don't.

3. Immediate release of these drugs to everyone with AIDS or ARC.

4. Immediate availability of these drugs at affordable prices. Curb your greed!

5. Immediate massive public education to stop the spread of AIDS.

6. Immediate policy to prohibit discrimination in AIDS treatment, insurance, employment, housing.

7. Immediate establishment of a coordinated, comprehensive, and compassionate national policy on AIDS.

President Reagan, nobody is in charge!

AIDS IS THE BIGGEST KILLER IN NEW YORK CITY
OF YOUNG MEN AND WOMEN.

Tell your friends. Spread the word. Come protest together.
7 AM ... March 24 ... You must be on time!
AIDS IS EVERYBODY'S BUSINESS NOW.

The AIDS Network is an ad hoc and broad-based community of AIDS-related organizations and individuals.

2010-08-14T22:26:00.000-07:00

My awesome friend Rivka staged a one-woman XMRV protest in D.C. I'm posting some pics and her YouTube video, along with her unedited account of events and explanation of her mission. For those who are well enough to do it, get out and X-ACT-UP!

____________________________________

FROM RIVKA:
____________________________________

Aug 14, 2010

Dear Everyone Who Cares About People With ME/CFS,

I just held my one-woman demonstration at the Red Cross national headquarters in Washington DC (Red Cross collects 45% of all blood donations in this country) and at the national headquarters of the U.S. Department of Health and Human Services, and it was a success. Here is the video.

On the first day of our protests, August 13, 2010, our first stop was the Red Cross headquarters. Lots of security showed up within minutes of me being there, but I simply educated them about XMRV. :-) This is how it went: My mom (the designated driver and videographer) started videotaping me standing in front of the front door while people were walking in and out of the building. A security guard walked up to me within two minutes and said I could not videotape and hold my signs there. I said "What about over there?" pointing to the sidewalk, not five feet away, but still in front of the door. She said she could not stop me from doing that. So I stepped five feet forward and proceeded with my signholding and talking into the video camera.

Her supervisor showed up a few minutes later and and spent all of his time on a cell phone describing to someone else what I was doing. I stopped the videotaping and turned around to ask him, "Who are you talking to?" He told me he was talking to his director. So I asked if he wanted me to talk to the director and tell him/her why I was there, protesting. No, was the answer. So I said, "Do you want me to tell YOU why I'm here? Would you like to see my signs?" (Who wouldn't? They are so colorful!) Yes, he said. So I told him about how long I've been sick (20 yrs) with CFS and how, finally, medical researchers may have found the potential cause of my illness, a new retrovirus called XMRV, and that it may already be in the nation's blood supply infecting new people who get blood transfusions. I told him how I was there to ask the National Director of the Red Cross to check the blood supply for this retrovirus.

As this went on, lots of people were walking by and many slowed down to read my signs.

Both the secrurity guard supervisor and the original security guard seemed genuinely interested, and the supervisor relayed all this info to his superior via his cell phone. Now done, I went back to my protest and holding of signs for my mom who was still at the video camera.

A few minutes later, I noticed an older man in a more professional suit-type of uniform watching me from another door. In fact, I now saw that there were a total of four security guards hanging around at different spots along the block. I asked the suited man if he was security. He did not reply. So I asked again, and he mumbled something. So I asked if he wanted to know why I was there, and when he said yes, I shared my story all over again, asking him, too, to tell the Red Cross Executive Director that I was there with my signs to ask for the nation's blood supply to be checked for the new retrovirus XMRV, and to screen all donations for this virus, and that I did not want anyone else to get sick like I have been for so many years.

After I was done, the older suited man, an African American, said, Like Arthur Ashe. "Who?" I said. Arthur Ashe, the tennis player, he repeated. He got HIV from a blood transfusion and died of AIDS, he said. "Arthur Ash!" I suddenly recalled the African American international tennis superstar and racial barrier breaker. "Yes, exactly!" Then the security director for the Red Cross (anyway, that is who I think he was) wrote down "XMRV" on a piece of paper so that he would remember the exact name to tell the head of the Red Cross, and we said goodbye. I finished up my videotaping and my mom and I moved on to the national headquarters of Health and Human Services, a few miles away.

There, it was a different story. This huge building is across the street, literally, from the U.S. Capitol Building. We were going to shoot the video by the HHS sign near the street, on the sidewalk, but it started to rain, so we ran to the building's front door and under the cement overhang. Security was super tight. We were there for about half a minute, getting in place for the shoot, when a security guard said we had to stop. I asked why. She called her superior and about three guys showed up. The head honcho told us we could not shoot the video if the camera was facing the HHS building (and what was the point of shooting the video there if it wasn't?). We were told to move. Period. We did. Nothing. We got nothing on video.

That night, reviewing the less than perfect Red Cross video made it clear we needed to go back. We decided to consider that day's efforts a practice run. So we drove back the next day and we shot it all, all over again -- this time in front of the HHS sign by the street and back in front of the Red Cross. No problem, after all, we were on the sidewalks this time. All legal.

My reason for doing these demonstrations -- my goal -- is found below. In short, I hope to inspire many other one-person demonstrations like this around the globe. With luck and media outreach, we'll get media coverage -- and that will impact the political situation surrounding ME/CFS, the politics that has, for so long, dictated our lives. See my note below, it is the same thing I said in my videos.

With hope for our future,
Rivka
Rivka (at) ThatTakesOvaries.org

* * *

People with ME/CFS:

It has long been a tradition of our democracy that when a people feel their needs and concerns are not being heard by their government they will demonstrate and protest.

This is a tried and true tradition of any democracy.

If we can have 100s of these mini-protests, like mine (of one, two or five people), happening around the country and globe, in front of our government offices and our blood donation centers and blood banks, we may cause some waves, get some press attention, and get some clinical trials and funding for ME/CFS and XMRV research.

Remember, protests and demonstrations -- holding up a sign in a public place stating your views -- are part of the democratic process. Let your voice be heard!

* * *

Dear Health and Human Services Director, Kathleen Sebelius,

I have spend way too much of the past 20 years bedridden and homebound with Chronic Fatigue syndome, an illness with a belitting name for a disability so severe.

According to the Centers for Disease Control there are 1 to 4 million Americas like me, all sick with ME/CFS.

Every year of the past 20 yrs, I hope and hope that my government will do what a government is supposed to do, and help its people -- help me. But every year I am deeply disappointed.

The National Institutes of Health, the NIH, invests $31 billion dollars annually in medical research for the American people. But of that $31 billion, in 2009 CFS research got $5 million -- about the same as what the NIH dedicates to Hay Fever, and about a 1/3rd of what is dedicated to Psoriasis.

Now, with a newly discovered retrovirus called XMRV that is linked to -- and perhaps the cause of -- CFS, we have an even greater reason to stop ignoring the 1 to 4 million Americans who are so sick, so desperate and so in need of help.

Director Sebelius, please dedicate more money to researching CFS and the retrovirus XMRV. Dedicate more money to clinical trials so we can find treatments. And protect the Americans who have yet to get XMRV from blood transfusions, because this retrovirus is surely already contaminating the nation's blood supply.

Please help us.

2010-05-05T18:20:00.001-07:00

This is Part III of a 3-part essay. Read Part I here and Part II here.

Strays: Part III

Late Spring 2008

Eight or nine months into treatment, as my heart made slow progress on Rifampin, I hunted around the Internet reading abstracts about bartonella and its related cardiac problems. It was hard to find anecdotal accounts of some of the rarer strains in humans. I began mining veterinary articles, which -- perhaps because the subjects were nonverbal -- included more elaborate description of the physical details of the subjects. These were the first articles I found that truly characterized cardiac bartonella. It was around that time that I found a near-description of my own cardiac symptoms in a veterinary article about twelve dogs with heart problems related to bartonella vinsonii subsp. berkhoffii, a strain of bartonella that had known transmission from animal to human. It had been recognized for some time in coyotes, with documented coyote-to-human transmission. On a parallel track, one world-class researcher in Raleigh, NC, Edward B. Breitschwerdt, was on his own obsessive quest to understand rarer strains of bartonella and their impact on human populations. Among other fascinating cases, he has written about a set of twins who seemingly contracted bartonella in utero: one died of a cardiac defect just nine days after birth. His papers on B. vinsonii subsp. berkhoffii in humans were published over a year and a half after I read the article on B. vinsonii subsp. berkhoffii in dogs, and saw my own symptoms in those purebreds and former strays.

B. vinsonii subsp. berkhoffii is a particularly virulent strain when it comes to the heart, at least in dogs. Alarmingly, eleven out of twelve of the dogs in the first article I read, even with treatment, died -- the dog who survived had been on continuous treatment with veterinary Cipro for three years. Clearly, this strain was a different beast from bartonella henselae. The symptomatic notes on the twelve dogs showed an alarming and dramatic infection that seized the dogs quickly, often before they had a chance to get help. A cocker spaniel, a Newfoundland, a coonhound, and two German shepherd were described as having "collapse," whereas a five-year old bull mastiff and a four-year old boxer succumbed to "sudden death." B. vinsonii subs. berkhoffii has also been found in human hearts, and sudden death -- which occurred in the elite orienteers with bartonella elizabethae, another strain that occurs in dogs -- is often an indicator of myocarditis.

Dogs are actually, it turns out, a better model for understanding human diseases than cats. In fact, it is no accident that I found the most descriptive detail of my heart symptoms in veterinary papers and extremely old medical texts, as those patients often had a more comprehensive, intimate relationship with their doctors that involved longer observation periods. In a recent article by Breitschwerdt's team entitled, "Bartonellosis: an emerging infectious disease of zoonotic importance to animals and human beings," the authors state, "it is increasingly obvious that the dog is a natural model for human bartonellosis and vice versa." This same article, published in 2010 -- a year after I was dying in my bedroom in acute respiratory distress breathing with a ventilator as my condition became more deadly, noted that two dogs were diagnosed with b. vinsonii subsp. berkhoffii leading to acute respiratory distress requiring ventilatory support. Other dogs developed "rapid cardiopulmonary decompensation" from this strain. The authors note, importantly, that a limited understanding of bartonella as "cat scratch fever" (bartonella henselae) does not give a clear picture of more damaging, non-self-limiting strains of bartonella in humans. In other words, when it comes to bartonella species, a cat is not a dog.

I was living a parallel reality to those dogs. My infection, after all, had affected my heart with torturous, crushing, utterly debilitating cardiac symptoms just a few days after I was bit. But B. vinsonii subsp. berkhoffii had begun to sound like a ringer for my heart symptoms, even before I remembered and verified the dog bite. For one thing, the technician at the lab that did my blood smear told me he thought I might have a rare strain of bartonella. On my blood slide, the bartonella organisms are bunched in the middle of the cell, whereas in most slides I have seen of bartonella they are clinging to the side. The technician explained this is a visual quirk, that actually the bartonella must be clustered in the concave part of the red blood cells.

I could not find any images of bartonella vinsonii slides, but I did find a slide of b. elizabethae that looked a lot like mine. So both of these became contenders as strains that might have infected me. Because of its lethality and the descriptions of the dogs just collapsing, I felt most strongly that b. vinsonii subsp. berkhoffii was my strain. It is known to cause endocarditis, myocarditis, arrhythmia, uveitis, choriditis, limping, splenomegaly, polyarthritis, and epistaxis in dogs, and endocarditis as well as neurological problems in humans. B. elizabethae, on the other hand, causes lethargy, anemia, and weight loss in dogs, and endocarditis in humans. I called my friend that day and left her a voicemail that said, "I think I've got doggie bartonella!" and I started barking on her voicemail. She reminded me of this message later, when I had my memories about the dog bite.

Around the time of my veterinary readings, unbeknownst to me, Dr. Martin Lerner announced some startling new data from the previous seven years of cardiac observations on ME/CFS patients. At the ME/CFS Conference in Westminster, London, he said that he had identified two distinct groups of ME/CFS patients: one with a herpesvirus illness (EBV, HHV6, HCMV) with no coinfections, and the other with a combination of herpesvirus infections and a co-infection such as Lyme, babesiosis, adult rheumatic fever, or mycoplasma pneumoniae myocarditis. For the first time that I know of, Lerner was publicly acknowledging a subgroup of ME/CFS cardiomyopathy patients whose hearts were likely coinfected with zoonotic, often tick-borne, infections (Lyme, babesiosis). Remember, Dr. Lerner found T-wave inversions and T-wave flattening on Holter monitoring in 90 percent of ME/CFS patients he studied, declaring this heart damage a biomarker. He also found ME/CFS patients to have abnormal tissue biopsies of the heart, and abnormal contraction of the heart indication weakening of the left ventricle. Meanwhile, Dr. John Chia, an infectious disease specialist from California with an interest in enteroviruses, announced his research that showed 135 out of 165 (82 percent) of the ME/CFS patients he tested by stomach biopsy had enterovirus antigens in their stomach tissue, compared with 7 out of 34 (20 percent) of controls, data that validated Richardson's earlier work on enteroviruses with a cardiac-affinity. While Chia's focus was not specifically on the heart (as Lerner's ongoing research has been), both of these raised an interesting possibility: was my heart first infected by a virus, back in 1992, only to be ravaged later by a dramatic attack of virulent bartonella?

In a particularly prescient moment of emailing my home visit doc in 2007 to convince him of my heart infection, I had sent him an article on the latest cardiac understanding of AIDS along with a letter: "Also notable is the attached article AIDS cardiac issues. The fact that pericarditis, pericardial effusion, and all sorts of heart infections are common amongst AIDS patients – and often caused by unusual factors such as staph – leads me to think that this could be a vast untapped area in CFIDS research where the immune parameters and co-infections are so similar to AIDS. Pericarditis leading to cardiac tamponade is one of the only conditions I could find in which chambers of the heart collapsed, which is interesting as Dr. Paul Cheney has found similar heart collapse in upright echocardiograms of CFIDS patients."

Two years after sending that letter to my doctor who thought that having blood like a dead person was not a cause for alarm, after I had been on an antimicrobial regimen for two years, the Whittemore Peterson Institute heralded the discovery of the retrovirus XMRV in ME/CFS patients, and this threw another curve ball. As it turned out, my letter to my hear-no-evil doctor was right on the money: most ME/CFS patients are infected with a retrovirus that seems to pave the way for secondary infections, just like HIV.

In a Q & A in the IACFS Newsletter (Vol. 3, Issue 1, April 2010), lead XMRV scientist Judy Mikovitz answered several questions about Lyme and other coinfections and their relation to XMRV, stating "The hypothesis that chronic XMRV infection creates an underlying immune deficiency is consistent with many co-pathogens including Lyme." She elaborated:

Q; With the known % of CFS patients positive for Mycoplasma species (~60% in multiple studies), Chlamydia pneumoniae (~10% in multiple studies), HHV-6 (~30% in some studies) and other infections, is there any concordance with XMRV positivity?

A: We have only done those analyses on the 101 in the original study, HHV6A was 10%, EBV ~14% and nothing else more than 10%. We are working with several groups at Lyme and those numbers may approach 30%-40 of those tested.

Q: Do you feel that XMRV could act to cause dysfunction of the immune system, allowing opportunistic infections (such as in 4, above), similar to HIV-1 in AIDS?

A: Absolutely that is our working hypothesis

I was correct in asserting to my doctor that ME/CFS patients, initially infected with XMRV, might later present with secondary infections similar to those of AIDS patients, who often get the spirochetal illness syphilis (similar to Lyme) as well as bartonella. I'm not sure why this reality has been obscured for so long in ME/CFS research, but I'm reminded of the sobering article I read about cardiac implications of HIV/AIDS -- about how they were not well tracked in the early years of the epidemic, as patients simply did not live long enough for their heart problems to become full blown. Having a new chronicity brought on a greater understanding of the illness running a progressive course. Funding and ACT-UP tactics, of course, also helped.

My life was still circumscribed beyond imagination, and by July of 2008, my cardiac symptoms were still quite severe after almost a year of treatment, even though I had had significant improvements from the previous cardiac torture. "The best I can imagine in life is a slow, progressive anorexia of everything," I wrote on July 22. My heart had still not returned to its pre-Cipro state for any extended period of time, and that was a relief, but it still slipped back to that state with some regularity without homing there, and on November 20, 2008 I wrote in my journal "Tonight the effort of breathing felt like it would end me. Death still feels very close, and still I think of little else but playing the game of survivor." It was a few weeks before my 40th birthday, and I had spent almost all of my adult years too sick to have a life.

On December 1, 2008, after my revelation about the dog bite and its connection to my cardiac symptoms, it occurred to me the local animal control officer might know something about where the white dog was taken, what shelter. I did some research and found the officer's name online -- her name, Candy LaFlam, seemed like a drag queen name more befitting of a flamboyant afghan handler than a small-town rabies monitor. My friend called her for me, since I was too weak to speak on the phone. The officer, a friendly woman who ran a dog-sitting business, had an immediate recognition when my friend described the dog that bit me. She said she was pretty sure she knew the dog personally. The man on Ireland street was actually the owner of the dog, she said, and he was pulling the wool over my eyes about not being the owner and about his intention to contact animal control. The man in fact had found the dog and brought it in to the animal control officer and told her he wanted to keep it, so she was mandated to quarantine it for ten days to make sure it was healthy. The dog had some blindness due to old age, with glazed and glossy eyes. It was about 30 pounds, part "miniature Eskimo dog," with dirty white fur, and partially deaf -- a male. After her ten-day quarantine, she returned the dog to the man. At some point later, she found the same dog dead by the Gorge. She brought the dog's body back to the man, not knowing how it died. My friend got the impression that Candy was somewhat unsure of the man's story then, but if the dog had a lethal strain of bartonella, sudden collapse at the Chesterfield Gorge would have been quite plausible.

Finally, I had my answer. The dog that bit me had been sick enough to die at the same beautiful Gorge where I had escaped to in my early weeks in Massachusetts, before it bit me.

At that point, however, I could not get tested for this strain, and had to be content with my general blood smear showing I had some strain of bartonella. Bartonella vinsonii subsp. berkhoffii is thought to be more likely in dogs from rural populations, where there is more tick exposure, and it is one of only a short list of dog strains of bartonella that also infect humans: B. vinsonii subsp. berkhoffii, B. henselae, B. clarridgeiae (Candidatus B. washoensis), B. quintana, B. rochalimae, and B. elizabethae. Human labs were not doing specific testing for most of these strains, so I tried veterinary labs. One veterinary lab I contacted about testing my blood, Zoologix, offers a panel test for the most common strains of bartonella found in both humans and dogs, but Zoologix refused to process my blood. Just this year, Dr. Breitschwerdt's lab,Galaxy Diagnostics, began testing humans for b. vinsonii subsp. berkhoffii, but since I have been on bartonella meds for almost three years, and since dangerous hypersensitivity reactions can be induced by stopping and restarting my bartonella drugs, Dr. Breitschwerdt agreed in a private correspondence that I would have a hard time getting an accurate test for B. vinsonii subsp. berkhoffii or other dog strains now. He wrote me: "the optimal testing time point is prior to administration of antibiotics. We do get positive Bartonella PCR/DNA sequencing for some patients while taking antibiotics, but this is not optimal as these bacteria are extremely hard to detect and antibiotics suppress the numbers and the growth in the enrichment culture step." I may never know exactly which strain I have.

I do know this: white animals have often been seen in mythological traditions as harbingers. The white dove, for example, is seen as a good omen, and the birth of a white bison is meaningful in many Native American traditions, especially amongst the Plains Indians such as the Lakota, who view it as a symbol of rebirth when the people of the world have fallen upon troubled times. I suspect some species of bartonella will be recognized as some of the most virulent, life-threatening infections of our troubled times. Tragically, Dr. Breitschwerdt experienced this first hand, when his own work quite surprisingly jumped species after his father -- a tough-as-nails former ironworker and WWII vet -- got sick with a bizarre neurological disease. His story demonstrates why it was so hard for me to connect the dog bite with my symptoms for years, and why it's so hard for many people to recognize dangers in their own back yards. Dr. Breitschwerdt, a veteran of zoonotic illness research, did not immediately suspect bartonella, despite the fact that his father had previous tick exposures but a negative test for Borrelia burgdorferi, the spirochete that causes Lyme. Dr. Breitschwerdt describes his father's symptoms as "retrospectively obvious" but, perhaps because of the nearness of the situation, he did not see them clearly right away.

Dr. Breitschwerdt ultimately found evidence of not one, but three strains of bartonella in his own Dad -- B. henselae, B. alsatica, and B. vinsonii subsp. berkhoffii -- and his father was treated and released from the hospital repeatedly, but his condition worsened until he ultimately died in a severely encephalopathic state. Despite appropriate and aggressive antimicrobial treatment for bartonella, and the fact that his son was a leading researcher on bartonella, Dr. Breitschwerdt's father could not fight the infection that had invaded his brain. Many of his symptoms, leading to his death, were identical to mine -- he had a lesion on his eyebrow like the one I had on my finger, he went into a stupor-like state that was described as nearly comatose, he had seizures and jerking movements similar to my myoclonic activity. By his final blood draw, just days before his death, his blood was only showing evidence of one strain of bartonella, thus indicating his antimicrobial therapies had worked against the other two strains. The remaining strain in his blood was B. vinsonii subsp. berkhoffii!

Dr. Breitschwerdt's article about his father, and the veterinary article on the dogs who died of bartonella vinsonii subsp. berkhoffi, are frightening to read. I know, from stopping my meds a few times, that my bartonella infection is not even close to being eradicated. My bartonella drugs are liver-toxic. If my liver conks out, I'll have to stop my only working meds. Many of my symptoms in recent years, as well, hint at an encephalopathic state, and Dr. Breitschwerdt's father demonstrated how bad this can be: he had hallucinations, dementia, symptoms initially thought to be a stroke, tremors, nonverbal states, severe agitation, inability to recognize his own family members, and near-constant confusion. Similar neurological symptoms from bartonella have been observed, it should be noted, in much younger patients, so these symptoms were not related to age. I have had many similar symptoms since contracting bartonella, though I have not detailed them here. As I write this today, however, I can barely read through my own words. I have a constant, maddening thumping on the right side of my head that has been almost continuous for the past year. My hyperacusis is still so severe I cannot listen to music and can handle very little sensory input in general. It is hard to open and close my right hand. I read things on the Internet and have to read the simplest paragraphs over and over again to understand them, as they initially appear nonsensical. These are just my neurological symptoms of the moment.

Had I finished this article on bartonella a year and a half ago when I wrote most of it (including the speculation about B. vinsonii subsp. berkhoffii), had the ice storm not come and thrown me into the hospital, then into increasingly severe neurological, immunological, and other symptoms until I almost died of respiratory distress, I would not have known about Dr. Breitschwerdt, his recent articles, and the death of his father. Most of these articles were only published in the recent months. In a moving departure from the overly-technical tone of most scientific articles, Dr. Breitschwerdt makes poignant observations about death and dying and the human medical system -- from his perspective as a trained veterinarian watching his father die. "In human medicine, unlike veterinary medicine, no physician claimed or accepted the responsibility to be my father's doctor," writes Dr. Breitschwerdt. He adds, "I found the human healthcare system to be frayed, if not broken."

These realities were not lost on me, and I am grateful to Dr. Breitschwerdt for validating my reality -- especially the deep emotional pain I felt when no one would take on the responsibility of my care -- both in terms of practical caregiving responsibilities and medical care -- and the tragic, broken reality when doctors finally did help me. My home visit doc unceremoniously dumped me after I sent him a letter requesting that he stop speaking to my family about my case. He wrote back that I had clearly shown I did not trust him, and that he could not operate in a medical relationship without "trust" (he was not willing to take actions to regain my trust, like admit he had been wrong about my Lyme disease). My LLMD later foisted off my case on a primary care doctor, implying that my condition was so serious and complicated it had become a liability. My own life, post-bartonella, has become more and more broken.

"Some years ago in a conversation with my mother," writes Dr. Breitschwerdt in the article about his father. "I suggested that the term natural death may well represent an oversimplification of the processes that end a person's life." Indeed, while hundred-year-old cardiology texts can describe the intimate, painful reality of a "natural death," the term natural death is used in modern society as a way of avoiding and anesthetizing the process of dying. This is exactly why a person dealing with a persistent, chronic, potentially lethal infection that invades the heart and brain but evades detection will face denial, derision, and perhaps a grueling and untimely death without a steadfast advocate fighting by her side. I believe there is another reason why veterinarians might be better at this job than human doctors: they are less hierarchical. They don't see a lowly groundhog as unworthy of human interest. They notice, in other words, what is underfoot. By working closely with animals and witnessing the close bond between humans and animals, they don't harbor as strong of an illusion that humans are above animal, and hence immune to insidious little forces of nature crawling up their pant legs. It is the same type of character that makes me admire the often-unlikable Dr. House: when he exhumes a dead cat to save a patient from a zoonotic pathogen, I want him to drive to Ireland Street for me, invade that man's back yard, and dig.

Natural causes are not inevitable. Adolf Hitler once said, "Nature is cruel, therefore we are also entitled to be cruel." It is true that nature is cruel, and that human nature is cruel, but it is Hitler's use of the word "entitled" that gets to me. I think this is what Dr. Breitschwerdt is getting at about natural death. To use that term to diminish the experience of actual death, of death death, is cruel. To walk away from a limping dog, a complicated illness, a person who needs care, is cruel. To not exhume the cat, in its own way, is cruel. It was not, after all, curiosity that killed it -- but rather a lack thereof. Nothing, in other words, entitles us to speed nature along by denying someone's symptoms and then call it a "natural death." Nothing entitles us to deny the complicated, often protracted process of a person dying.

I find it interesting that some drugs, developed for rare medical conditions, are called orphan drugs, and the conditions they treat are called orphan conditions. I wonder when some of us, trapped in the cogwheel of obscure physical realities, will stop being medically abandoned, orphaned, cast astray? Almost as if by vampirism, I have become that dog with the quivering back legs, the dog that tried to wander from its own fate and thought it was being rescued, then found itself dragged back to near where it would die -- yet in one, life-affirming moment, said no with its teeth. I am thankful for the impulse behind that no, the fight that still lives on in me.

2010-05-05T17:34:00.000-07:00

This is Part II of a 3-part essay. Read part 1 here.

Strays: Part II

"If a lion could talk, we could not understand him" -- Ludwig Wittgenstein

December 2004- Spring 2008

It is hard to describe the futility of explaining to people a lethal, fringe reality that it outside of their understanding. Wittgenstein had it right when he said "If a lion could talk, we could not understand him." Talking animals only exist in cartoons, and people would balk at the very idea, just as they balk at the idea of homebound, medically disenfranchised patients presenting their own stories. But Wittgenstein was getting at something deeper: language is borne of one's own physical reality, and a lion's words would always be near-misses to humans. Words are, by nature, a way of pinning down the gestalt of experience, but that process does not translate the life of a lion to the life of a human. This is why the Innuit need a hundred words for snow, and the Aztecs needed few to none.

To save my own life as my heart got worse, I tried to translate the lion's roar of my raging infection to a language my doctors might understand. But I was stopped by limited knowledge of bartonella and the fact that dog-to-human strains of bartnonella were so newly recognized that my infection was outpacing the research. It also turned out to be a stroke of bad luck for me that ME/CFS cardiac issues were getting prominent attention just a few months after the onset of my bartonella infection, when well-known ME/CFS expert and recent heart transplant recipient Dr. Paul Cheney began talking about his new theories of cardiac ME/CFS. This new information threw me off the trail of zoonotic infections and distracted me from the obviousness of the dog bite. As I said, I had dealt with serious ME/CFS cardiac issues for years, but they did not resemble my current horror, nor could I find another ME/CFS patient (I tried) with symptoms resembling mine except one Swedish patient who, I quickly decided, might have bartonella too. Yet I did fit the paradigm of ME/CFS heart damage, so I was eager to read Cheney's new work. My Holter monitor test in 2000 had showed T-wave inversions and T-wave flattening, which Dr. Martin Lerner has demonstrated through heart biopsies are indicators of viral cardiomyopathy in ME/CFS patients. Dr. Lerner, like Dr. Cheney, developed a focus on ME/CFS cardiology after his own heart was in danger, quietly treating himself with antiviral drugs for six years until he could resume treating patients full-time and apply what he learned to the ME/CFS community. He expanded upon the work of Richardson and Hyde, fine-tuning his diagnostic technique of using Holter monitoring to detect viral cardiomyopathy, then doing biopsies of heart tissue to prove the existence of the viruses, and lastly treating his ME/CFS cardiac patients with antiviral drugs. Despite a write-up in the Wall Street Journal after he presented his work at a cardiology conference, Dr. Lerner's work is still not well known to most cardiologists, though ME/CFS patients began to take more interest in it when an antiviral drug trial for Valcyte -- an oral verson of the intravenous drug Lerner had used for years -- started on ME/CFS patients at Stanford. In the year after my Holter test showed abnormalities consistent with Lerner's theories, I tried to hand Dr. Lerner's WSJ article to a cardiologist in her exam room, and she simply refused to open her hand to take it, as I were trying to give her a nightclub flier, and walked out the door, pronouncing me "deconditioned." She told me to go home and exercise.

Dr. Sarah Myhill in the UK has explained how ME/CFS patients in fact go into borderline organ failure every time they even sit or stand, due to reduced cardiac output and mitochondrial damage: "in CFS sufferers the drop may be from 5 litres lying down to 3.5 litres standing up. At this level the sufferer has a cardiac output which causes borderline organ failure." My cardiac output, measured on the test Myhill referred to called the Impedance Cardiography (a test I did manage to get -- in a fragrance free doctor's office -- in the ensuing years after my bartonella infection began), was remarkably low upon standing, 3.1 litres per minute which, adjusted by my size, worked out to an even lower number on the cardiac index (1.8 litres/minute) -- that and my other cardiac parameters were similar to those of a 79-year old woman with Class IV heart failure in one published study on Impedance Cardiography that I found on the Internet. It was also significantly lower than what Dr. Arnold Peckerman found in his study on ME/CFS patients, low enough that he would have called it left ventricular dysfunction, whereas Dr. Cheney would have probably called it diastolic heart failure based on his diagnostic criteria at the time. However, since CFIDS heart abnormalities occur at the level of the mitochondria or heart muscle, they do not typically show up on an echocardiogram -- the gold standard for heart failure determination. Diastolic heart failure in general, often called "heart failure with preserved ejection fraction," can be hard to diagnose with echocardiogram alone.

Bartonella vegetations, I later found out, are also quite difficult to detect on an echocardiogram, so diagnoses of bartonella endocarditis take into account risk factors such as body lice infestation (which I don't have) or HIV status. One study reported that "Compared with other cases of infective endocarditis, cases of Bartonella endocarditis are more fibrotic and calcified, less vascularized, with less extensive vegetation and chronic inflammation." (Lepidi, Hubert, MD et al. "Quantitative Analysis of Valvular Lesions During Bartonella Endocarditis"). Myocarditis might not show up on an echocardiogram at all. Myocarditis can be indicated by an EKG, and I showed these indicators, such as Complete Right Bundle Branch Block, on more than one EKG since the dog bite that seemed to initiate my new cardiac problems. Many cardiologists believe this is a marker of myocarditis. "The presence of right bundle branch block or left anterior fascicular block virtually always indicates the presence of significant myocarditis," writes Leslie T. Cooper, Jr, MD in Myocarditis: From Bench to Bedside. This is seconded by L. David Hillis, who writes, "a complete right bundle branch block may be caused by acute myocarditis. . . On occasion, right bundle branch block occurs in patients without underlying cardiac disease" (Manual of Clinical Problems in Cardiology) and also by a book by members of the American Heart Association's Clinical Cardiology Council, which states "Characteristically right bundle branch block or left anterior fascicular block signifies underlying myocarditis." (The AHA Clinical Cardiac Consult by J.V. Nixon, Joseph S. Alpert, etc.). My EKG from a few weeks after the bite also showed something called an RSR Pattern that can indicate a ventricular aneurysm -- a condition that often happens after a heart attack or myocarditis. My doctor at the time told me the test was normal.

In this endemic Lyme area, where I live in an area of dense vegetation, nobody thought to test me for Lyme and coinfections when my heart got so dangerously symptomatic -- which might have included a bartonella test. With my reduced Q -- or cardiac output -- on the Impedance Cardiography, I was squarely in Myhill's category of patients who go into borderline organ failure each time they stand or sit, even without this additional heart infection. But ME/CFS cardiac issues still did not begin to explain what was going on. I had had trouble sitting and standing for my entire course of ME/CFS, but the crushing/squeezing terror was something on a totally different Richter scale, and it had come on suddenly.

Once I became so incapacitated it was inconceivable for me to get to a doctor, I could not get anyone to treat me. Finally, more than a year and a half after the dog bite when I landed a home visit doctor, he was so incompetent he only held a stethoscope to my chest once or twice, and ignored the dramatic change in my symptoms and the fact that my EKG tests were abnormal -- nor did he help me, despite my pleas, to get a cardiologist interested in my case. I begged him to try and get me access to hand-held echocardiogram equipment so we could test my heart at home, and he wrote it in his notes then did nothing as far as I know. I emailed cardiologists and telemedicine doctors all over the country during that time, desperate for answers. My doctor was so useless that, one day when a nurse was putting in an IV and saw that my blood had turned coal black in the tubes, he didn't call me back for 48 hours, even after speaking to his colleagues who told him they had only seen blood like that in patients who were "already dead" -- and then he just brushed it off and offered me no help, nor offered an explanation for the blood he had called "markedly de-oxegenated." He conveyed all of this in a cheerful voicemail message, that he had only heard of blood as de-oxygenated as mine in corpses. The nurse who had taken my blood said she had never seen blood that color before.

It's hard to describe what it's like to muscle through medical miasma with hardly any strength at all. I was desperate for someone to understand the cardiac horror I was going through. But descriptions of cardiac illness had really staled in the era of sports medicine and defibrillators. I scoured the Internet trying to find others with these symptoms, and though I found some near-comrades in people with ill-defined cardiac symptoms who fit into diagnoses like Cardiac Syndrome X and variant angina, their symptoms were not quite like mine. However, these conditions of unusual cardiac pain both seem related to endothelial dysfunction, and bartonella is known to impact endothelial cells.

Ultimately, the accounts I found of symptoms that most matched mine were in old homeopathy and eclectic medicine and cardiology texts from the 19th and early 20th century -- texts predating the invention of antibiotics and invasive cardiac testing, when illnesses ran a natural course. A homeopathic reference for the remedy Spigelia antheilmia, for example, describes a subset of heart patients with a "crushing sensation" in the chest, "shooting pains" that "stab through the heart," and "a sense of suffocation," all of which are aggravated by "motion." It associates these symptoms with pericarditis and notes that the patients "are often anxious about their heart, their pains, and what the future might hold." The Eclecic Practice of Medicine by Rolla L. Thomas, M.S., M.D., 1907, describes endocarditis patients (many of whom also have myocarditis and some pericarditis) as having "great oppression or a sense of constriction in the chest," and "distress in the precordial region" along with shortness of breath. "In the more aggravated cases, the patient will lie on his back," notes the test, "or incline to the left side. There will be distention of the veins of the neck, with marked cyanosis." Interestingly, this book also notes that "great care must be taken to secure rest and quiet. The patient should be placed between blankets, and all company, or anything that would tend to excite the patient, must be forbidden." My heart symptoms would worsen from the slightest interaction with company, or any stress, to the point that I had to limit human contact to almost nothing, and still do or my condition worsens. Until I read that text, I had no way of explaining to people how I would have increased cardiac symptoms from a simple conversation with someone.

In Dr. O. Phelps Brown's The Complete Herbalist, pericarditis is described as causing "pain, oppression, weight, palpitation, . . . debility, restlessness, and great nervous irritability." With endocarditis, "there is at first pain about the heart, whose disordered action may be violent" and "in dangerous cases there is extreme anguish." Thomas also describes myocarditis: "If, however, there is a sense of constriction of the chest, some palpitation, more or less dyspnea attended by slight pain, and the pulse is rapid, small, and easily compressed, evidences of cardiac enfeeblement, myocarditis would be suggested." Additionally, he writes, "There may be dilatation of the cavities, and if there has been localized myocarditis, weakening the tissues, partial aneurism may result. In the localized or circumscribed form there are areas of necrosis, which are followed by abscess formation. These abscesses may open into the cavities of the heart, and thus enter the blood-stream, giving rise to abscess formation in other portions of the body. A favorite location for an abscess is in the interior wall of the ventricle near the apex and septum. They may empty into the pericardium, resulting in suppurative pericarditis. When they perforate the heart cavities, in addition to poisoning the general blood with an accompanying septicemia, they often give rise to malignant endocarditis. This form usually terminates fatally, though, in rare cases, nature throws a covering around the abscess, the pus is incapsuled, and undergoes caseation or calcification." As for prognosis, Thomas writes, if "the patient can refrain from severe mental or physical exertion, can live in an equable climate, and be much in the open air, the life may be prolonged to its allotted period. Where frequent attacks of angina occur and the cerebral circulation suddenly fails, death may occur quite suddenly." To recover, Thomas recommends "Absolute rest must be enforced in every case; the reclining position should be observed, and nutrition maintained."

In contemporary literature on the heart, it was rare to see mentions of cardiac conditions in which lying down improved the patient's condition, even though for me this was the only thing that helped. Nor could I find any mention of slight mental exertion, visitors, excitement, or other things that made my own heart condition worse. Contemporary descriptions of cardiac illness rely upon measurements -- METs (metabolic expenditures), echocardiographic parameters, electrocardiograms -- with little attention given to the patient's pedestrian habits that seem to help or worsen the condition, except for contemporary habits such as eating artery-clogging fast food. The exception to this is sometimes found in veterinary texts, where behavioral observation is not seen as a suspicious practice, as it now is in human medicine except in cases where patients are shamed for being inactive or fat. With human conditions, behavioral qualities whether they are socially sanctioned or just plain odd are more often shuffled into psychiatry. This has to do with the dualistic focus on cure or death, with chronicity and adaptive technology still seen as largely relegated to an arena outside of medicine.

My family had gone into an increasingly distant orbit, and I could not get the practical caregiving I needed to maintain the continuous bedrest that was the only thing keeping my heart from dramatically declining, though I kept begging my family members for help. Nobody else seemed to comprehend how bad it was except for the rare witnesses I had in my space, who saw a catastrophic situation. As I declined further and further, and was later bitten by a tick in the summer of 2007 that gave me confirmed Lyme and probable babesia, I began a new strategy recommended by a friend of a friend who was a pediatrician. I began writing letters to my home visit doctor so as to create a paper trail, and asked for stronger antibiotics than the Augmentin he had prescribed for tooth pain I was having (my trigeminal nerve had apparently been attacked by the Lyme). Reluctantly, he finally gave me Cipro -- which miraculously eased my heart symptoms by about twenty to thirty percent in a matter of weeks. It was, in a Dr. House-ian drama, the kind of bullseye that completely re-routes a medical investigation.

As I wrote in my journal on 11/3/07, "Cipro has given me a reprieve from death for now, though it is probably damaging my tendons. Nevertheless, this drug is a miracle: the crushing, suffocating sensation in my heart, what a comparable patient described as a horse kicking her in the heart -- has relented, and I can sit up for spells without the symptoms thudding through my body and crushing the life out of me." My home visit doctor admitted to me on the phone around the time of that entry (I took notes) that the only explanation for this was that "a bacterial infection was affecting my heart and Cipro was treating it," even though he had previously written in his medical notes "Pt is fixated on an occult or cardiac or systemic bacterial infection. She is already on Flagyl and Augmentin with broad coverage. I told her that it is very unlikely she is having endocarditis or pericarditis but of course can't prove that since she cannot/will not get tested." (Sept. 13, 2007). In the same day's notes, he writes that he "will comply w/ her request to try a diff/ antibiotic." He notes I'm having "chest heaviness/squeezing, chills, etc." What he does not write is that I had just penned my will, and I had written him letter after letter begging for help in the months before that. He also does not write that he would not help to get me testing at home, to "disprove" my "fixation" on endocarditis or pericarditis, that I was having shaking chills so bad my teeth were chattering, that right then I was so delirious I could not speak in whole words but just grunted out sounds, rocking back and forth as my friend desperately called the emergency room and asked if they would do anything at all to accommodate my severe chemical sensitivities. Within a couple of days of that hospital call, I got the Cipro my home visit doctor had reluctantly prescribed. At first, it gave me a Herxheimer reaction so severe I was briefly almost psychotic from neurological die-off.

A few weeks after getting Cipro, I convinced a Lyme literate doctor (LLMD) to take my case, and finally I found a doctor who listened to me. In the week before I first talked to the LLMD, my home visit doctor wrote in his notes, "Cipro is helping her heart sx's substantially" (this is one of the first times he did not put "heart" or "heart symptoms" in quotes, as if the pharmaceutical suddenly proved their existence). "She can sit up, crushing heart sx's [two arrows pointing downward to indicate reduction], chills gone" (10-25-07). In our next conversation (11-6-07) he notes "Cipro helps her "heart" sx's but now developing tendonitis." Cipro and other fluoroquinolone can cause severe and permanent tendon damage, so tendon problems often force people off the drug, and my tendons were in so much pain they did feel like they might rupture. He then told me he was taking me off the Cipro and would not give me an alternative broad-spectrum antibiotic with similar action. At that point I almost lost it. I was still very symptomatic, and I was terrified of the relapse that would inevitably result if he did not provide an alternative and I had not yet had a full interaction with my new LLMD. He wrote "Plan: Stop Cipro which pt resists saying it is the only thing that has relieved her "heart" sx's & that she is willing to risk permanent tendon damage which is against my medical advice." At this point, in a life-saving moment, my new LLMD ordered a repeat Western blot for Lyme -- which was positive -- and a later blood smear for bartonella -- which was positive. I sent the positive Lyme test to my home visit doc, but by the time I had gotten a copy of his medical notes and the records in his file on me, he had conspicuously removed that positive test from his files. I had had an earlier Western blot, performed just a couple of weeks after my tick bite -- a time frame often considered too early to get definitive results. That test, which had positive and equivocal Lyme-specific bands, was negative, but my doctor said nothing about a retest and Lyme is a clinical diagnosis, based on symptoms and tick bites as well as tests. I had also, at that point, had a positive IFA test for Lyme. In his notes on 10-25-07, before my positive test,Western blot, my home visit doc wrote "pt now absolutely convinced [big circle around "convinced"] she has chronic Lyme disease (although she's never had it & her - [negative] testing)." This notation came a couple of weeks before my positive Western blot for Lyme.

My first test for bartonella by my Lyme-literate doctor only tested for bartonella henselae and not the other strains. It was not until April, 2008, that I finally got a positive blood smear for bartonella, but my LLMD had been steadily treating me for the presumed bartonella infection. She had already rendered a clinical diagnosis of bartonella, based on my bartonella-typical symptoms such as pain on the soles of my feet, myoclonic seizures, and odd rashes -- and my positive clinical response to antibiotics that target bartonella such as Cipro and Rifampin.

It is painful to read through my home visit doctor's notes and feel his obvious derision that nearly ended my life. Throughout his notes, he almost never put the names of other organs or systems in quotes, only "heart" and "heart infection" as if he was taking a medical history of the Grinch, or of someone too dumb to locate the thing beating in her own chest. He wrote down the phone numbers I had given him for hand-held echocardiogram equipment over a year before he gave me the Cipro, equipment that would have enabled heart testing at home, but wrote nothing about follow-up action on those number. He wrote many notes about my crushing and squeezing "heart" symptoms, and my obvious distress over how bad my symptoms had gotten, but he was treating me like a hysteric.

In the Spring of 2008, as I made slow progress on my medications for bartonella, I was still fighting the Lyme and probable babesia that had infected me the summer before, and it was an uphill battle. The Winter before that was treacherous and long, characterized by forced stillness as I tried not to backslide. After a brief stint with Rifampin once I had to stop Cipro due to tendon issues, my liver enzymes were elevated so I had to stop my bartonella-specific antibiotics for two months, and during that time I was slowly relapsing, trying everything I could imagine to cleanse my liver so that I could resume treatment. My heart was getting worse again, the crushing sensation returning. Meanwhile, I took high-dose Amoxicillin for Lyme and a slew of herbal remedies for all three infections. I wrote on January 25, "My heart has been really bad this week and all of January I have slid downhill again. I'm afraid my heart is going to stop. Please God stop the terror and let me have those health gains. Let me keep sitting up for my meals -- a luxury I've waited for for 3 1/2 years, in hell, my heart crushing me." The odd lesion on my right ring finger had reappeared, cracking into an open painful wound that would not heal: a sign that seemed to come and go as bartonella treatments succeeded and failed. In early February, finally, I was able to restart my bartonella meds and my heart again began to experience some relief.

But neuro Lyme started running rampant, just as some of the bartonella symptoms were tamped down. In February, my vision had suddenly and dramatically diminished in my right eye, then gradually returned with acupuncture treatments. An opthalmologist suspected it to be optic neuritis, a sign that Lyme or bartonella had gone neurological. My Lyme doctor agreed to switch me from oral antibiotics for Lyme to Bicillin injections, which are thought to better target neuro Lyme. Soon after that, with the re-addition of another drug, Flagyl, I woke up one day, tapped my fingers lightly on the refrigerator door, and felt lightning-like pain shooting up my arms. I stuck my hand under water and the water felt scorching, like liquid fire. I could not pick up a piece of paper without excruciating pain. I had suddenly developed peripheral neuropathy. For a few weeks, it was unbearable, with water feeling like fire and the task of making a sandwich feeling like someone sticking needles under my fingernails, but the magnitude diminished in time over the next few months. Still, it was debilitating, and once again I was helped by my acupuncturist, who would come into my living room, quietly walk around me as I laid on a mattress on the floor, and stick needles right into the tips of my fingers until they sometimes bled, joking that she felt like both a Geisha as she padded around the mattress with no shoes, entertaining me with stories and tending to my needles, and a torturer.

I had had bartonella for almost four years at that point, and it was not going down without a fight, and in fact was just barely controlled. I still had seizures, coma-like episodes, difficult opening and closing my right hand, and other neurological symptoms, as well as constant reminders that the infection was eager to resume a tighter grip on my heart. The white dog had receded into my memory, along with an entire landfill of former cognitive functions. Bartonella, Lyme, and probable babesia had turned my remaining gray matter into a useless slurry. Aside from the myoclonic jerking, peripheral neuropathy, vision loss, and other obvious neurological symptoms, my brain was less functional than ever. I would often lapse into a stupor-like state that felt like my cerebral vasculature was a series of narrowing mine shafts filled with noxious gas: my brain, as best I can describe it, was just barely wakeful. A sense of complete unfamiliarity would frequently overcome me, so things I once seemed to "know" filled me with a sense of amnesia. I watched TV and could no longer understand social cues, or what motivated the characters. Writing became impossible. Worst of all, the emotional content of language seemed to have been removed as if by a paint stripper, its vibrant hues replaced by a factory-applied gray. Words no longer had the same texture. I also felt irritable all the time, and I experienced hyperacusis. My movements were off. My right eyelid twitched regularly, accompanied by a vibrating sensation in my right temple. I would have lightning bolt sensations, or vibration sensations, course through my body. My brain got stuck in what felt like internal tics, odd jerking sensations in my thoughts that I tried, with great effort, to push to the next frame. I had a pervasive sensation of wanting to flee the cinema of my life: I knew the heroine had very little chance of escaping her predicament alive. Continue to Part III.

2010-05-02T09:35:00.000-07:00

Strays

Since May is Lyme Disease Awareness Month, I am posting in three parts a long essay I started before the Ice Storm about my infection with the Lyme coinfection bartonella (which is frequently tick-borne, and people are often infected with bartonella at the same time they get Lyme), and it's interaction with XMRV, ME/CFS, and cardiac issues. I have now been in treatment for both Lyme and bartonella for almost three years but have not been able to edit this essay until now. This is Part 1.

September 2004

Finding the answer to my medical puzzle in Massachusetts was like trying to narrate a fabulist bestiary out of zoomorphic clouds. It was impossible to articulate. One week I was lying on my porch as raspberry-eating chipmunks squatted on rocks to grasp berries from the bushes, and the next week I was fighting for my life against a zoonotic pathogen that had entered my heart.

My first drive down Ireland Street had seemed like jailbreak, as the side windows of my Volvo framed weather-beaten New England capes. The Hilltowns housed the tougher stock. Ireland Street goes most of the way to the Gorge, until the turn-off by a llama and alpaca farm. I had just moved to Western Massachusetts at the end of July, 2004, from Providence, where I had spent years too ill to walk fifty feet to the end of the block, mostly bedridden and confined to a tiny ten foot by twelve foot room where I had a cot-sized futon, a computer and a 13-inch TV. Even though Rhode Island is the smallest state in the Union, small enough to be spanned in an hour, I only got to enjoy its scenery in my early years there, when I was less sick. An hour was further than I could typically travel after that: fifteen minutes was further than I could travel. Though I promised my dog Rowley until the day he died that we would one time return to the Jamestown lighthouse along the Southern coast, he saw that I never went anywhere. My life was characterized by constriction and constant pain. It took years to marshal the strength to make my move across the state line.

When I first saw the perfectly-carved masterpiece of water and rock known as the Chesterfield Gorge, I started crying. It was emotional for me to be out of my old apartment, at this pristine and barely-trafficked spot. I had this feeling that maybe I was going to escape my hell, even though my heart was thumping out of my chest from the effort of walking from the parking area to the railing overlooking the drop-off, and I had to lie down on the trail to recover. It's hard to describe what it is, after so many years of being so ill and so punished for any motion with horrific symptoms, to dare to feel hope, but I thought I might be recovering a little bit now that I was in cleaner air. People with severe chemical sensitivities sometimes do recover if they are put in a pristine environment, and several people had spent over a month making my house on five acres very green so I could live in it. The Gorge was the my first post-prison landscape. It was like a first slice of blue after years of barred windows.

I was driving down Ireland Street a month or so later -- on September 8, 2004 -- when I saw a frail white dog limping slowly down the middle line, stopping occasionally to wobble like a confused drunk. I slowed my car but the dog showed no signs of leaving the road, waving its butt like a surrender flag. Its eyes were big bowls. When I see its image in my head, I can picture the diseased eye. I think only one eye had signs of not functioning, and the dog's skin looked bad. Its fur was thinned out and the visible flesh was irritated and pink. When I got out of the car, the dog didn't try to run. It could barely hobble. It was on the verge of collapse and seemed terrified, as if an illness had seized it suddenly or it had just been abandoned there. It had a collar but no tags. Its bones were not sticking out so it probably had not been away from food and shelter that long. I recognized some of myself in that dog. For example, it seemed to be avoiding exertion, which is a symptom found in those with mitochondrial dysfunction or cardiac problems, who have excruciating symptomatic payback or even death from the exertions normal people take for granted. In retrospect, I think the dog could have had a damaged heart, because it was not suffering obvious weakness from malnutrition and dogs will attempt exertion until they are in severe pain or will just collapse from it -- or that it was simply at the end of its days. Severe pain did not seem to be this dog's worst problem, as it did not flinch from being handled or wince when it jumped in the car, and it was not panting from distress, as dogs will often do in acute pain. It didn't seem to have the energy for panting. I had a thought the dog might have been attacked, and perhaps that's why it was avoiding the woods and staggering down the road, but it had no scratch or bite marks. It was a scruffy little dog, sweet and scared.

I'm very allergic to all dogs but a few hypoallergenic breeds, so I did not want to put the dog in my car. The nearest house was close to the next turn in the road, and I couldn't run or walk either, so I herded the dog toward my car door. Once the back door was open, I shoved the dog's butt a little so it would jump and it didn't resist, just seemed so weak in its shaky back legs. I had grown up in a family that often picked up strays. I remember my sister, when we were kids, building a habitat for a shivering little mouse out of cardboard boxes so it would not freeze to death beside the grocery store where she found it. My Mom once brought home a cat she found at a donut shop that we named (originally) Donut, and we owned a couple of second-hand dogs before my allergies worsened. Now, I can see the citified hubris of assisting a sick dog that staggers out of the tick-ridden woods, but I was not thinking about a 19th century death. I had lived, for so long, a disability of postmodernity and chemical culture.

I found help at the second house -- a place with a trailer in the yard. I think it was then, when I shuttled the dog out of the car and it began to realize I was going to abandon it and a man appeared in the doorway, that the dog snarled and nipped at me and bit down hard enough to break my skin. I downplayed the bite because I was concerned that if the dog appeared vicious it would be put down. In fact, I did not remember this detail until I found the email I had sent my then-partner about the incident. It was a huge fact to forget all these years. The man at the door had on a wife beater and pants, and I could see movement in the dark space behind him, though he was filling the doorway with his stance, obscuring my view. I heard his wife's voice from somewhere in the din, and suddenly she appeared with a bowl of water. The man had a big charming smile, and he reassured me he knew the animal control officer and would try to get the dog medical care. I decided to trust him, plus I really had to get out of there. I was growing sicker from the dog's dander and also from the laundry fragrances on the man's clothes. I deposited the dog and went home where I wrote the email I later found:

Sent: Wednesday, September 08, 2004 5:17 PM
I just had a sad dog experience. I saw this lost dog who looked really sickly weaving along the road. I picked him up and drove him to two different nearby houses, until the second guy took him in and offered to call animal control. I couldn't keep him or bring him home -- I was having a massive allergy attack and wouldn't have even taken him in my car but I just knew he would get hit. He also snapped at me and broke the skin a teeny bit, so I hope he didn't have rabies or anything. . .

I forgot this crucial biting clue because my cognitive problems prevent me from keeping a steady narrative sometimes. I had learned in over twelve years of illness that few doctors were interested in crucial clues unless they turned over the stones themselves, and I had also lost most of my functional memory. The dog bite should have been memorable, since I have only been bitten by dogs twice in my life and they were both little white dogs -- the other was a vicious, child-hating poodle owned by Great Uncle Leonard and it left a tiny heart-shaped scar on my left hand. But this bite was not a big deal to me at the time. I did not connect the dog and the claw hands and the horrors that followed, not until more than four years later, after hovering close to death most hours in between. This fight for my life is still hard to talk or write about, especially since I am still battling cardiac symptoms that finally feel, after years, that they are not imminently lethal all the time.

When I finally made the connection that the dog might have been the reservoir of disease, I realized how skewed my sense of time had become. I had come to associate my new, screamingly life-threatening level of disability with the state of Massachusetts, since it started here, but actually my first few weeks here were hopeful. Reading the emails from the weeks before the bite, I can't believe how alive I sounded in my first month in this new state, how I could luxuriate over words and how expansive the hours seemed. In the pit-and-pendulum years that followed, all time seemed to be crushed into a thimble, and I could only think of one repeating thought as I dragged my dying body from hour to hour: how was I going to stay alive? How could I get anyone to help me live? There were barely enough hours in the day to choke down one meal, to do some research online to try and save my own life, to beg yet another numb-eared person for help and be rejected like a mangy stray. And sleep: sleep was a long, long poem channeled through a Ouiji board.

I was waking up every day with a crushing, suffocating sensation in my heart that worsened as the day went on, and became excruciating at night, when my heart became as intrusive and violent as a jackhammer. I was desperate for answers, and desperate to stay alive. In one episode of House, a man at gunpoint takes Dr. House and some others in the hospital hostage, demanding that they get to the root of his deadly illness and save his life. As the weeks wore on and my cardiac symptoms became more torturous, I was almost that desperate for some route to viable treatment. Like Dr. House, I kept turning over stones and ruling out diagnoses, but doctors often view such persistence in a patient as a kind of madness, and dying without help brings its own kind of madness. It was clear to me I had no chance to stay alive if I didn't fight, yet I had much less stamina than that dog, who used the simple strategy of throwing himself into the bright light to get noticed. I had to follow that dog's courage in facing more abandonment and rejection as he fought for his own life. I had to throw myself into the light, even if people interpreted my illness as disheveled desperation.

I made very little progress over time, because I was just too sick to do much of anything but try to stay alive. I told a friend it was a "rock hammer pace," to refer to the scenes in the Shawshank Redemption when a prisoner chips away at a wall with a rock hammer to escape. It took a year of antimicrobial medications before I had enough memory to consider the significance of that dog. After a month and a half on a new anti-malarial drug in the Fall of 2008, I began to have vivid flashbacks of scenery from my childhood. To feel momentary luster, even though still horribly ill, gave me a glimmer of hope that my brain was starting to revive. Right then, the sick white dog started to insert himself in my mind with totemic significance. I saw his face very clearly. One aspect of my many years of myalgic encephalomyelitis (ME/CFS) is that I have had some degree of facial agnosia. In the early years of ME/CFS, when I lived in San Francisco, I was one of two witnesses to an armed robbery that occurred at 4:30 in the morning at an all-night grocery store, but I was such a terrible witness that, after bringing me in to look at a lineup, the cop dismissed me as useless, since I could not remember the criminals' faces. I remember they were running with a box, but could not recall their hair color or the hue of their car. My memories are often vague, boxy. Faces slip away, yet they can suddenly reappear in crystal focus, so acute it's as if a synapse just activated, which is what happened with the dog. Though I could not remember the date that I picked up the dog, I did remember I wrote an email about it.

So I ran a search of my saved emails on the word "dog."

And then a search on the words "claw hands."

See, my severe cardiac problems had started the night of the claw hands, and I knew if I picked up the dog before the claw hands there might be a causal relationships between the two events. My new partner and I had just started fooling around. Suddenly, I had ripping pains across my chest and an iron-jawed squeezing around my actual heart. My arms froze and my hands formed into claw shapes -- I could not pry the fingers apart and they were clenched tightly together and turned inward. I wanted to shout for my partner to get off of me but I had suddenly lost the ability to speak and could not even grunt out sounds. My body was rigid. I thought I must be having a heart attack. Though I had had chest pains with much of my sexual activity in the previous decade, this incident was different and absolutely terrifying. From that moment on, for years of incomprehensible terror, I was barely alive with wrenching, suffocating cardiac symptoms. When I reviewed my emails from that period around the dog bite, I learned something remarkable: the claw hands incident had happened three days after I picked up the sick dog. I had described the whole ordeal to a friend, and in my email box there are a string of responses with joking titles like "claw hands puppet theater." On Sept. 12 I wrote to her "I'm glad that 'claw hand sex' is a genre now. But yes, attempted claw hand sex should be a crime. I should be put into some kind of clawcuffs pronto." On Sept. 21 I told her I had an episode of "claw foot" too. While we had a pattern of making fun of our most bizarre symptoms, I was absolutely terrified about my heart and these new symptoms. Something was horribly wrong, and there was nothing funny about it.

In the weeks and months that followed, I also began to have seizure-like episodes of myoclonic jerking, would go into a terrifying, coma-like state where I could not move or speak -- often after seizure activity, and I had a swollen lymph node in my left armpit that would not go away. My partner would often massage the migrating sore nodes in my neck and pelvis, but the single armpit node was huge and unyielding. I also had two odd, scaly patches of skin -- one on my breast and one on my arm -- that did not go away for about a year. Additionally, I had a small, rounded, painful lesion on one finger that soon began to crack, bleed, and refuse to heal. My cognitive problems had also worsened, but the most marked thing was that I simply could not safely do anything for myself -- even the slightest motion would cause excruciating cardiac symptoms, and it was so dangerous for me to try to get food, get to the toilet, make a phone call, eat, or even slightly lift my head.

But the problem -- really, the problem I have had since I became chronically ill -- is that I could not get enough practical help to get through my days, let alone fight the medical system. And having a medical record is like having a police record. New symptoms are more often viewed as suspicious new crimes than important details in a larger puzzle. While Dr. House has a whole team of people to write and cross off postulations on a whiteboard, ravenously searching for an answer to a medical mystery, the real experience of chronically ill patients tends to be much different from this. The chronically ill are the ones who have to sleuth around for answers. They are also the ones who have to prove their own innocence, and assert repeatedly that they deserve some quality of life beyond the status quo. The years of my horrific cardiac symptoms, in fact, mark a period of epic neglect from my health care providers. At the time of the claw hands, I had just begun care with a new physician, and he ignored my abnormal EKG, then later refused desperate requests for a home visit as I grew too ill to get to his office. In my medical file, there are repeated notations of calls from people advocating for me that say things like "She is going into a 'coma-like' state. Can't talk, can't move. Feels that she is close to death" (1/19/05) and "Pt has been 'crashing badly' with CFIDS/MCS. Blood pressure is low and pt is too weak and sick to come to office for IV." (4/7/05). When I finally got a home visit doctor, he was much worse than the other doctor. I barely survived his care. His care was, at best, verging on murderous. When I read his medical notes, I actually do feel like someone confronting an attempted murderer at a trial: I'm filled with the most terrifying sensation that this man tried to kill me, that he ignored my pleas for help until I was seconds from death. Throughout his notes, he writes the word "heart" in quotation marks (which he doesn't do with other, unvalidated symptoms), as if talking about a speculative sighting of Jesus on a tortilla, not talking about the organ pumping life through my body. I can hardly bear to think about those months in his "care."

I had had ME-related cardiac problems that had been documented since the year 2000 even though they went back to 1992, including signs of cardiomyopathy, orthostatic intolerance, tachycardia, chest pains, and post-exertional worsening of symptoms. I had anxiously awaited every bit of attention given to ME/CFS cardiac issues, and my abnormalities were consistent with theories that ME/CFS starts as a viral cardiomyopathy, especially since my onset began as a flu-like illness. Dr. John Richardson of the UK was perhaps the most long-standing ME/CFS doctor studying cardiac causes of ME/CFS. Richardson spent 40 years examining enteroviruses along south bank of the Tyne, following them through generations, with a particular focus on coxsackie viruses, which are known for both ravaging neurological symptoms and devastating effects on the heart (particularly myocarditis, but also pericarditis and valvular dysfunction). Richardson strongly believed enteroviruses could explain the multi-system and organ damage relating to the broad symptoms of ME/CFS. He also found that coxsackie could be easily passed from a mother to an unborn child, leading to fibroelastosis or maldevelopment of the heart, or structural abnormalities of organs including the brain. Right before his death in 2002, Richardson finally published these findings in his book, Enteroviral and Toxin Mediated Myalgic Encephalitis/Chronic Fatigue Syndrome and Other Organ Pathologies (Haworth Medical Press 2001). His work interests me not only because my Mom's father had a valve in his heart replaced, but more importantly because my Mom had polio as a child, and polio is perhaps the most notorious enterovirus. If an asymptomatic mother could pass coxsackie on to an unborn child, why not another enterovirus such as polio? It is possible that I was born with neurological or cardiac weaknesses that went undetected. My mother and I joke about my childhood maladies, such as my insomnia that started soon after birth, well before Kindergarten nap time, or the chronic headaches and flu-like symptoms I began to have at the age of 7. I was mostly a healthy child, but I have noticed some childhood consistencies with other ME/CFS patients who are friends of mine. For example, some of us could not run long distances when we were children or young adults, even if quite physically fit. We would experience sudden weakness or faintness upon running around a track, and shortness of breath that made us different from the other kids. I often tried to train myself, in fact, to run longer distances but I never was able to succeed. It seemed odd that, despite my efforts to physically condition myself through cycling and frequently-used gym memberships, and my steady workout schedule that gave me toned muscles and an enviable resting heartrate, my long-time smoker friend in college was easily about to take a class in cross-country running and push herself to run a mile, whereas I could not do distance running no matter how fit I was.

Canadian ME/CFS doctor Byron Hyde took an interest in Richardson's work when most ME/CFS doctors were more interested in neurology and immunology. "I have found that during the first years of acute onset ME/CFS disability," writes Hyde in the Handbook of Chronic Fatigue Syndrome (Jason, Fennell, and Taylor, eds.), "the incidence of pericardial effusion is unusually high. This seems to settle down with no apparent short-term problem, and after a year, the cases of pericadial fluid decrease considerably. However, the incidence of valvular disease in people in their 30s and 40s appears to be higher than in the normal population." He also notes "several cases of elevated right heart pressure, significant septal defects, and increased myocardial wall thickening," then adds that "Dr. Richardson has identified more than several hundred cardiopathies in his ME practice." These tidbits on ME would have been helpful when, as I fell into acute-onset ME/CFS in 1992, I immediately experienced chest pains and shortness of breath as well as orthostatic hypotension upon exertion (and my doctor did not even do an EKG), but the new symptoms that began with the claw hands brought on a level of ongoing terror and disability that defies description. It was violent and constant and totally new.

It is known now, from research on ME/CFS deaths, that ME/CFS patients die earlier than they should, and cardiac deaths are one of the top three causes of death, but little is known about the exact nature of these deaths, since extensive autopsies are rarely performed. The family of Casey Fero, a 23-year old ME/CFS patient in Wisconsin who died of ME/CFS-related myocarditis, tried to remedy this by starting a tissue bank where ME/CFS patients could donate their bodies to science. Fero had been found on autopsy to have viral myocarditis, but his heart also showed fibrosis, or scar tissue from past infections. Patients with Lyme and coinfections die suddenly and tragically as well, many of cardiac deaths. One example of this was the untimely and eerie death of Leslie Wermers, a 41-year old Lyme patient who died of heart failure in her sleep. Before her death, she had been videotaped for inclusion in the Lyme documentary Under Our Skin, and those videos show her speaking at a memorial for another Lyme patient, saying, "She shouldn't have had to die." In another scene, she talks about how she knew the illness would kill her one day. Could she have done anything to convince doctors of this? I know what she knew in her own body, and I am still fighting to save my own.

Most people would call 911 or go to the ER with a terrifying, life-altering cardiac incident like I had with the claw hands, but I could do neither of those things. It's a basic fact of people with severe chemical sensitivities: emergency medical care is just not an option. Because I had suffered angina-like pain in my chest before, I hoped this was that type of pain on a new level, though it felt completely different. It felt like a momentary heart attack that later turned into a constant heart attack. The cardiac distress was of a greater magnitude than I had ever experienced or ever heard of, and my hands had never frozen into claws like that. It wasn't until years later, when Under Our Skin showed a neurologically-impaired Lyme patient with similar hands, that I saw any example of what had happened to me. The tremendous crushing sensation in my heart started right after that. In my journal, I wrote of the crushing sensation as a trash compactor, those giant steel jaws in the back of a garbage truck that casually and crushingly smashes the cargo. The sensation was horrendously crushing, but not a tree on top of my heart -- more of a heart-shaped lead encasement wrapped completely around the heart, and being screwed tighter and tighter around the organ. I could not imagine anyone feeling this and not dying from it immediately, and I felt like I was imminently going to die. Most of the time, most hours of most days, there was no way to distract myself: the pain was so immediate, demanding, and extreme. It was absolute cardiac agony, all day long, with almost no respite. The only slight relief came when I would lie in an inverted position, with my butt on a pillow and my legs up on a wall. Inversion helped me somewhat, but then, going upright at all -- even to lift my head for a minute to drink some water, wound amplify the crushing sensation tenfold, so that I might spend hours after that one exertion feeling as if a steel-toed boot was kicking me in the heart. I spent most of my days in that inverted position all day. I ate my meals like a sick dog, lying on a mattress on the floor with my body flat and the plate on the floor so that I could lean over and scoop the food into my mouth, since lifting my head even the slightest bit would increase my heart symptoms, sometimes for hours. The level of impairment was bad enough, but the actual physical sensation was incomprehensibly bad. It felt continuously like descriptions I have read of heart attacks. I was often in screaming agony, with a squeezing and crushing around my visceral heart combined with an odd vibrating/rustling sensation of the heart laboring to beat as my neck veins bulging out and global hypoxia filled my body. It was like a corset, boning around my heart, tightened to the point of suffocation, a feeling of constriction beyond description, a small box of hell I cannot adequately depict. All I can say is this: there's no way I survived that. There is no way a person could survive that level of cardiac agony for that long.

So for three years I lived like this. Even with my legs inverted, the crushing around my heart was continuous, squeezing all of the oxygen out of my body, and getting up for water or urination was terrifying as it would make my symptoms so much worse. The distress was so bad I would often spend hours at night just lying on the floor screaming, sometimes calling my family and begging them to not let me die, knowing none of them were going to come and help me as they had lapsed into a chilling denial. I was just in complete terror, the life being violently squeezed out of my body. I had watched my own dog die of bone cancer that had metastasized to his lungs, filling them with fluid that was drowning him from the inside out, and I once knew a guy who was almost murdered by an escaped convict trying to strangle him to death, until his eyes bulged out and his neck was bruised. The sensation in my heart had that feeling of imminent suffocation. I was dying a violent and horrible death, and I could not get sufficient practical help or medical care and was for the most part too ill to help myself, especially since I had to spend almost all day in an inverted position and could not risk exertion as it would cause my cardiac symptoms to worsen so intensely. I had so little oxygen traveling to my tissues. This fact was palpable and maddening. I have read accounts of drownings or suffocation and it had that level of desperate struggle to it, of a person trapped in a car underwater breathing the last dregs of a tiny air pocket as every cell scrambled desperately for life. I could feel it in my brain, my organs, my limbs. My neck vein felt like it would pop, so bloated from trying to compensate for my heart's failings. It was, like cardiac syphilis, a violent cardiac death -- with "violent" being a very important qualifier.

Though patients describe both angina and heart attack (MI) as "severe," "heavy," "squeezing," and "crushing," the difference is often the magnitude and the length of the attack. Myocardial infarction is also described as "deep and visceral" and "the worst pain someone has ever experienced." Women, in addition, often have a "feeling of impending doom" with heart attacks, but of course this "feeling," though an actual symptom, often gets them written off as anxiety sufferers rather than intuitives. However, while an myocardial infarction might last longer than angina and be more severe, neither of these are ever described as continuous. I had these same symptoms -- a severe, heavy, squeezing, visceral, crushing around the heart -- with a feeling of impending doom -- but with few breaks: my attacks were not episodic but rather the breaks between them were episodic. I had, in fact, symptoms of a heart attack nearly all the time. I know this probably sounds inconceivable, but some people have daily migraines too. It was beyond belief. And it was happening to me.

By late 2008, as long as I was lying down and rarely exerted myself at all to do daily tasks, and took several different antimicrobial drugs that I had been on for a year, my heart did not spend all day at that level, but was still quite bad, much worse than it was before I moved to Massachusetts, and with an ongoing tone of threat -- since my crushing symptoms returned with some frequency, and I feared they could again become constant. That was, of course, before the ice storm that pushed me to an even worse state of illness. On proper antimicrobial drugs, my heart was finally getting better -- the same heart my doctor had put in quotes as if I was making it up. My parenthetical heart, on the other hand, was devastated from years of terror.

I now know that the infection causing my heart symptoms is a bacterial infection known as bartonella. Before 1990, only two bartonella species, B. bacilliformis and B. quintana, were known to exist in pathogenic forms, but since 1990, at least 22 bartonella species have been described in the medical literature, and at least half of these are considered human pathogens. Many of these are known to have an affinity for cardiac tissue, both in humans and in dogs. I do not have the most commonly-tested species, bartonella henselae, as I tested negative for it on PCR, but I do have one of the other species, as proven by a positive blood smear that depicts a vivid image of the bartonella bacteria clinging to my red blood cells. My heart has also responded to bartonella-specific antibiotics, which my Lyme-literate doctor knew to be a clinical sign that bartonella had invaded my heart tissue. Bartonella infections of the heart are frequently lethal -- almost always lethal without prompt treatment, and they can be particularly virulent in the immune-compromised, mostly those with AIDS although clusters of bartonella heart deaths have also been found in elite orienteers, IV drug users, and the homeless. Links between ME/CFS and AIDS immunology are well-established and have been written about eloquently by many researchers and writers, so its no surprise I would be vulnerable to bartonella's invasion of my heart.

Since this essay was originally written, and the link between ME/CFS and the retrovirus XMRV was found by the Whittemore Peterson Institute, it is quite possible that bartonella might be more virulent in someone with ME/CFS and behave as it does in AIDS patients. Studies have found bartonella to be associated in AIDS patients with bacteremia, endocarditis, aseptic meningitis and dementia. Interestingly, one recent paper in Medical Hypotheses postulated that acute bartonellosis itself can behave like AIDS: "We speculate that the pathophysiology of the acute phase of human bartonellosis resembles AIDS, with a period of immunosuppression following the infection and later, clinical manifestations of immune reconstitution subsequent to treatment." Constrictive cardiac conditions such as cardiac tamponade and constrictive pericarditis are seen in AIDS patients, from secondary infections. However, and this is important to note, if tamponade (a state where the pericardium fills with fluid and chokes the heart) is appearing in ME/CFS patients, it may go unnoticed unless a patient dies and a proper autopsy is conducted, as patients with hypovolemia often have a different presentation of cardiac tamponade called low pressure tamponade with more mysterious (and less detectable) clinical signs. Streeten and Bell found that most ME/CFS patients have chronic hypovolemia, sometimes with less blood in their veins than someone who has bled to death.

Bartonella is known to cause endocarditis, myocarditis and pericarditis, but its most common cardiac complication is endocarditis, which is where the valves of the heart fill with vegetations. An infected pericardium can also constrict the heart, if it fills with fluid and clamps down. Myocarditis can cause left ventricular dysfunction or even aneurysms that can in turn become infected and might lead to a squeezing or crushing sensation and reduced cardiac output, or just dramatic cardiac weakness and death. I finally got a positive bartonella test, but only 3 1/2 years into the infection. I don't know that anyone else has lived that long without treatment from an active bartonella and highly symptomatic infection in the heart. In fact, most strains of bartonella have been identified in humans after the patient has died and the tissue examined. Attention to this growing public health threat has been slow-growing, but a recent slew of articles compared bartenella rochalimae -- a strain spread by rat fleas -- to the Black Death. "Bacteria that can cause serious heart disease in humans are being spread by rat fleas, sparking concern that the infections could become a bigger problem in humans. Research published in the December issue of the Journal of Medical Microbiology suggests that brown rats, the biggest and most common rats in Europe, may now be carrying the bacteria." ("Rat Fleas Spread Heart-damaging Bacteria" California Science and Technology News, November 25, 2008).

The cardiac involvement was beyond obvious in my case, but my doctors would not listen. With gravely reduced cardiac output, and little oxygen transported to my organs, I could feel every function in my body failing each time I lifted my head to take a drink of water. It was like being trapped under a tree where nobody notices the tree. I even said this to my Mom, who at one point was trapped on her side under a car that had to be lifted off by many neighborhood men. She had a crushed pelvis, and my sister and I had to run and get help when I was only six years old. I asked Mom why she could not see that I was crushed under a car, why nobody would lift the car off of me, and she didn't say much. No metaphor, no literal language, could get through to anyone in my life. I tried to use the simplest phrase to communicate with my sister that I was dying from this. "Please don't let me die," I begged her. "Please come out here and help me."

"We just don't understand what you mean by death," she responded.

"I mean death death," I said.

My father came out to assist me temporarily, but would not stay longer and help me though I was begging him for more help. I was pleading my case to him with tears running down my cheeks, as if before a judge, but I knew I would not be acquitted. I wrote in my journal, a week before he left, "In between bouts of heart terror and rage: near-death sensations in my chest, venous pressure in neck again, heart failure big time. And there is no one and nothing to bail me out." As he stood in the doorway ready to go, my stepmom waved to me from the car. Dad was telling me about the stray she had brought along with her -- a bitch she had rescued from a puppy mill. His face lit up when he talked about this, about the dog making a steady recovery and getting socialized after years of neglect. Then the door slammed and he was gone. Continue to part II

2009-12-03T22:19:00.001-08:00

Dear Friends,

As some of you know, my health has worsened substantially over the past five years since I acquired a chronic bartonella infection that caused serious cardiac issues, and since I contracted chronic neurological Lyme on top of my already-severe case of ME/CFS and MCS. Just as things were starting to improve on proper meds for bartonella and Lyme, the worst Ice Storm in 30 years hit Massachusetts. Without power, I lost my heating system, well pump, lights, stairlift, and was thrown into a catastrophic state of emergency. I ended up in the hospital for 4 1/2 days. Hospital stays can be lethal for people with chemical sensitivities and ME/CFS. As ME writer Jodi Bassett states, "It is very common for severely affected patients to spend 2 months, 6 months, 12 months or even YEARS or longer recovering from a hospital trip. For example, some patients have not regained their previous very low-level of health 2 or 4 years after a trip to hospital. Some never do recover, and for some patients the overexertion is so severe as to be fatal." Dr. William Rea has written "chemically sensitive patients can -- and do -- die in hospitals from exposure to chemicals but it is always blamed on organ failure or recurrent infection," and ME/CFS patient Sophia Mirza died after a serious decline prompted by forced hospitalization.

After the hospital, I collapsed so severely nobody thought I would survive. I spent most of this year in horrifying, POW-like conditions -- trapped in a small corner of my bedroom and the adjoining bath, too ill to even crawl to my bedroom door, desperately fighting to get enough help to stay alive. I could not speak out loud as it would wind me too much and had to communicate by written notes, generally only had about four minutes or less of human contact a day, and was just waiting to die. Because I was so weak and had such insufficient care even for tasks like help getting to the toilet or emptying a bedside commode, I usually spent ten hours a day lying on the bathroom floor near my bed, so I could be close enough to the toilet to use it. My hyperacusis also became so severe that the sound of someone setting down dishes beside my bed was excruciating, so staying in the bathroom helped me to avoid the noise. I would crawl to the bathroom, and spend my days barely moving on a pile of towels as I watched ants make grid patterns on the ceiling, then crawl to my bed to eat my meals. Baths consisted of wiping myself down with baby wipes infrequently, and I was too weak to change my clothes but every four or five days. Over time, I also lost my ability to breathe and had to begin using a non-invasive ventilator to assist breathing. It was terrifying thinking I would die like this, but not as terrifying as not having the basic care I needed to die a humane death. During this entire time, I had to fight to keep the medical care and personal care attendants I had, which was already insufficient, and I dealt with regular gaps in care that were life-threatening.

Miraculously, due to aggressive treatment interventions, I have recovered some of my functionality after a year of struggle. The total bedriddenness lasted over seven months. While I have come a long way from where I was six months ago and it's a miracle I'm alive, I have a quality of life so poor at this point that it could only be described as barely existing.

I am inviting you to donate to my medical and caregiving fund so I can regain some of my abilities and resume the writing and activism I love so much (and blog more!). With the new discovery that a retrovirus named XMRV likely causes ME/CFS, there IS HOPE on the horizon, but also other treatments that are helping small segments of ME/CFS patients right now that I would love to access. I have utilized some treatments the past year that have quite literally pulled me back from the brink of death. I am very hopeful that with enough determination and support, I could get much better. I know this because SOME treatments I have done have already given me improvement -- but have also drained my savings. While I'm no longer fighting for my life every minute, my life still hangs in the balance. The ME/CFS treatments that have helped me are considered "experimental," and thus are not covered by insurance. Because I must have doctors and chemically-safe nurses visit me at home, I also pay for much of my conventional medical care out of pocket. In my case, the most
expensive thing is practical assistance to meet my day-to-day care needs. Since 80-90 percent of home care in America is provided by families, people like me who don't have families willing to provide care are in an impossible situation -- around-the-clock care where I live costs around $150/day and the state is cutting back on its personal care attendant services. Another relapse, due to my inability to afford the care I need, will most likely be fatal at this point.

I barely lived through this year, and you could help me to "live for the cure" as AIDS patients used to say! Any donation, great or small, will be hugely appreciated and will go directly toward my medical care.

Donations of $15 or more get a free "ask Peggy anything" email (in other words, you can ask me any question via email -- an expert opinion, a personal question about living with chronic illness, love or life advice, whatever you want) -- some of the best questions may get posted on my blog (so let me know if you're okay with this and if you will let me include your first name or prefer to be anonymous). I'll answer anything that isn't offensive. My expert areas include any of the blog topics to the right, or you can just ask me about something else. Please write the text of your question in the comments field of Paypal when you make your donation, or email your question to peggy at peggymunson dot com or include it in the comment field of your donation (I will match emailed questions to the name on the donation, so make sure you're using the same name and include your name on each or I won't be able to respond).

Really generous donations $100 or higher can also receive a personalized, signed copy of my latest book, Pathogenesis!!! (be sure you include a correct mailing address and any requests you have about how you want me to sign the book, written in the comments field of PayPal or sent to peggy at peggymunson dot com!!).

NEW! Thanks to the generosity of my writer, editor, educator, and sex goddess Tristan Taormino, super generous donations of $150 or more can receive a free video from Tristan's PuckerUp collection! (some titles excluded).

For those who can't give financially, please know that your support has already meant the world to me. Without the kindness and encouragement and practical support of so many of my friends and contacts and total strangers, I would not have had the will to fight. Your kindness, prayers, and good will have meant the world to me, so thank you from the bottom of my heart.

The button below will direct you to a safe donation page:

With love and gratitude,

Peggy

2009-10-22T14:17:00.000-07:00

Fly Away to XAND-ado, or Where Is Elaine DeFreitas?

The discovery of antibodies to the retrovirus XMRV in the blood of 95 percent of ME/CFS patients has led to an air of celebration best expressed by these 20+ year ME/CFS patients who partied with funny hats that read "I heart retrovirii." It has also led to a new name for the illness: XAND or X-associated neuroimmune disease. But two questions are on everyone's minds: how do we keep the momentum going when the patient community is so frail, and where is Elaine DeFreitas?

First, let me talk about XAND and why it's so exciting.

Retroviruses are rare in the general population, whereas most other viruses found in ME/CFS patients are ubiquitous. Most viruses discovered in ME/CFS patients have been common or fairly common herpesviruses such as CMV, Epstein Barr, HHV-6. A finding of a retrovirus in 95 percent of a patient group argues very strongly for causality.

This is why our ME/CFS luminaries -- including the doctors who have put their careers on the line for ME/CFS patients -- are making strong statements about XMRV being a cause of ME/CFS. Dr. Paul Cheney, who treated patients in the Incline Village cluster outbreak of ME/CFS, wrote, "The finding of antibody or active virus in 95% of CFS and 4% of controls is a result that argues for causality, in my opinion, especially with the associated RNAse-L corruption and NK functional impairment that might predict such an infection."

Dr. David Bell, who treated a cluster outbreak of ME/CFS in Lyndonville, NY stated in his newsletter,"Now I am not going to be too optimistic -- I think XMRV is going to turn out to be the 'cause' of ME/CFS, and I think treatments will be available from every family physician in America who accepts Medicare. The question is whether this occurs next year or twenty years from now."

I would argue that the best determinant of whether treatments are available in one year or twenty has a lot to do with whether we remain soft-spoken or ACT-UP, whether we deny history or make sure it never gets repeated, and whether we stop feeding the hands that bite us.

So how do we keep the momentum going?

First, the problem. Judy Mikovitz, who spearheaded the XMRV research at the Whittemore-Peterson Institute, said ME/CFS patients are too debilitated to even easily infect other people. Addressing why XMRV hasn't spread like AIDS, Mikovitz said in Science News, "It's probably not spreading very fast, because people with chronic fatigue 'are too sick to do anything.'"

Too sick to spread our own epidemic! It's almost t-shirt worthy.

In the Centers for Disease Control since the findings, there are already rumbles of a counterattack. ME/CFS program head William Reeves has made ominous statements to the press about validating the XMRV research. In the New York Times, he said, “If I don’t know the nature of the cases and controls, I can’t interpret the findings." Then he added, “If we validate it, great. My expectation is that we will not.” The Times went on to report that Reeves, "noted that there had been false starts before, including a study in the 1990s linking the syndrome to another retrovirus, which could not be confirmed by later research." One has to ask if these statements are a bizarre level of prescience, a threat, or just a total lack of scientific objectivity.

The main "false start" was of course the research of Elaine DeFreitas, who published evidence of a retrovirus in ME/CFS patients in 1991, and then mysteriously -- after the CDC failed to replicate her findings -- disappeared into her own haze of illness.

So where is Elaine DeFreitas?

This question is important because, as activists, we have to understand what happened to DeFreitas to keep history from being repeated and studies from not being repeated.

A 1996 Newsweek review of Osler's Web reads almost like a prediction about DeFreitas' legacy: ". . .when the CDC publishes a paper saying it has been unable to replicate her findings, her support evaporates. By early 1995, the saga has cost [Dr. Paul] Cheney and [Dr. David] Bell their marriages, and a regretful de Freitas fears her career as a scientist is finished. The book closes with the image of an infectious disease spreading unchecked as an arrogant medical establishment looks the other way."

It is important to note that DeFreitas thought she found in ME/CFS was an unknown human retrovirus. The only known human retroviruses at the time were HIV and HTLV-1/HTLV-2.

As Hilary Johnson reported in Osler's Web:

"DeFreitas spoke next. . . . 'Clearly this virus is not HTLV-two. We now have additional data that verifies that point.'. . .Then DeFreitas moved on to the most interesting aspect of her work: the virus's appearance. 'We've look at four of these five cell lines. We can see particles by electron microscope, but not extracellular virus,' she said. 'We are not looking for a C-type retrovirus.' The significance of DeFreitas's comment most likely was appreciated by most present: every known human retrovirus was a C-type."

The ME/CFS forums are buzzing with people who claim to have "insider information" that Judy Mikovitz thinks DeFreitas actually discovered XMRV in ME/CFS back in the early '90s. Since I got sick in 1992, this means my illness could have been cured before I lost my whole life.

So why wasn't the illness cured then? Hillary Johnson wrote that her impressions of the CDC was that it was full of ignorant frat boys unable to launch an organized conspiracy, but I don't think we should underestimate the power of a group that invented hazing. A 1994 piece for the New York Native by Neenyah Ostrom about the CDC's antics was appropriately titled, "Retrovirusgate." In Ostrom's article, the picture starts to look frighteningly like. . . the present:

"The Kyoto meeting and the San Francisco press conference resulted in major press coverage for CFS in early September 1990, including stories in the New York Times, USA Today, Newsweek, Philadelphia Inquirer, Boston Globe, Toronto Star, Montreal Gazette, San Francisco Chronicle, and the Charlotte Observer, among others. In April 1991, a formal report of the retroviral findings was published by DeFreitas, Cheney, Bell, and eight colleagues in the Proceedings of the National Academy of Sciences USA. . . .(8) And here the "CFS retrovirus" story appears to have come to a complete halt. None of the questions raised by DeFreitas and colleagues- or anyone else-about the virus has been answered to date. What happened?"

While a lot of patients seem to believe now the CDC will be excited about the XMRV findings and the extensive media coverage, I think a funny hat is the last thing on Reeves' mind. Right now he is probably thinking about damage control.

Getting rid of DeFreitas in the early 90's, in fact, didn't take much hazing at all, but it did take a script that reads like a frat boy's excuse to show up late for his second semester classes. In fact, as Dr. Paul Cheney recounted on his blog, what it took to stop DeFreitas was about equal to the cost of two unpurchased plane tickets.

Here's how Dr. Cheney told the story: after studying many ME/CFS patients in the 1980s, he had noticed unusual immune disturbances and contacted Elaine DeFreitas at the Wistar Institute, and she subsequently found retrovirus genes associated with ME/CFS. Her work was attacked by the CDC who failed to replicate her findings. DeFreitas felt they had manipulated the magnesium concentration and changed the primer stringency of her original study, thus skewing their results, and she suggested flying CDC scientists to Philadelphia to run assays alongside her in her lab so that they could make sure the procedure was done accurately. As Dr. Cheney's reported, the CDC rejected the offer due to “lack of funds to buy plane tickets” for a trip from Atlanta to Philly.

What happened to DeFreitas after the publication of her work almost reads like a parable of ME/CFS activism. DeFreitas, like most ME/CFS patients, not only got discouraged but became too sick to go on. Now, nobody seems to know where she is. In 1994, according to Osler's Web DeFreitas was dealing with a painful condition called reflex sympathetic dystrophy (RSD), but the ME/CFS community began to whisper that she might actually have contracted ME/CFS from working with patients' blood. Dr. Cheney's partner Charles Lapp examined her and ruled out ME/CFS, but Dr. Davin Bell was unconvinced, and encouraged DeFreitas to see him at Harvard for further evaluation. Just like the ME/CFS patients unable to travel to see their doctors, she was simply too ill to make the trip.

Later in Osler's Web DeFreitas said, "I could see myself twenty years from now, when I'm a high school biology teacher and someone calls and says, 'Hey they just found a retrovirus in CFS.' And maybe that's how it will happen. And I know how I'll feel -- I'll feel great."

On the flip side, the NIH recently awarded Mikovitz's team and London researcher Dr. Johnathan Kerr a $1.6 million grant from the National Institute of Allergy and Infectious Diseases (NIAID) to continue research into the disease mechanisms of ME/CFS. We can only hope this will be enough to cover the plane tickets of anyone who doesn't follow Mikovitz' research protocol. And ME/CFS patients can take heart that, on the day of this writing, amazing ME/CFS activists, researchers, and doctors are speaking at the Chronic Fatigue Syndrome Advisory Committee (CFSAC) to provide advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for the Health of the U.S. Department of Health and Human Services.

So how do we keep the momentum going?

Still, we cannot be -- and I can now use this word properly, as few have done in talking about my illness -- politically fatigued at this juncture. Hillary Johnson wrote, "Indeed, in light of the Science study released today, what may have seemed like sheer incompetence and political maneuvering in the early 1990s needs to be re-examined by the U.S. Congress. It’s not a minute too soon to utter the words, 'Class action lawsuit,' either. "

Fortunately, ME/CFS patients can Tweet, post to Facebook, blog, and create viral interest in what is going on now -- which was not true in 1991. Let's not recreate Michael Moore's sad-but-hilarious "1st Annual Gulf War Syndrome Fun Run" where limping and wheelchair-bound GWS patients (often diagnosed now with ME/CFS) tried to slowly stagger toward the capital with their oxygen tanks. But let's do ask for the help of our able-bodied comrades this time around, who might be more willing to Tweet than to march.

At the very least, there are a lot of questions to be asked about why nobody tried harder to replicate the research of DeFreitas using her exact methodology, or why the CDC used a pathetic "lack of funds for plane tickets" excuse as to why they wouldn't do the research properly. True, those were pre-Priceline days, but come on: I'm fairly sure a donor in the ME/CFS community would have sprung for plane fare if it meant forestalling decades of agonizing pain.

_____________________________
UPDATE:
Now THIS is what I'm talking about -- a brief video from the CFSAC meeting criticizing Reeves:

2009-10-17T15:03:00.000-07:00

"First, Do No Pharma"

As Audre Lorde once wrote, the master's tools will never dismantle the master's house. In a complicated world of fast-moving virology, shape-shifting illness branding, and vaccine controversies, it is not always easy to find the master or deconstruct his toolbox. With the recent discovery that 95 percent of ME/CFS patients have antibodies to the retrovirus XMRV, the first master is obvious: the Centers for Disease Control. The CDC, as Hillary Johnson recounted in Osler's Web, swept aside (and distorted) the evidence of a retrovirus in ME/CFS patients that was discovered by Elaine DeFreitas in 1991. So ME/CFS patients are waiting for the CDC's counter-attack on this new XMRV science, which has been all-but-prophesied by CDC's CFS program director William Reeves' statements to the press. As he stated in the New York Times on the XMRV discovery, "If we validate it, great. My expectation is that we will not.”

Personally, I'm also concerned with another tapeworm, the one that causes well-meaning Lyme patient-activists to call ME/CFS a "wastebasket diagnosis" when they have suffered from similar life-destroying vagueness, the one that causes people with chemical sensitivities to insist that viral propagation is always a byproduct of vaccines, mercury, pesticides, or bad diet, and the one that causes perfectly astute people to jot off blog entries claiming that "Big Pharma" is making up the connection between XMRV and ME/CFS just to sell vaccines.

What I see in that is a game of telephone in which generally astute people are doing the propagandists' work, not aware of how they are actually serving Big Pharma, the chemical industry, and the CDC. After all, projected vagueness and diversionary tactics are old hat for the CDCs ME/CFS program.

I, of all people, do not deny the harm caused by pesticides, mercury, or vaccines: I live in a virtual bubble due to severe chemical sensitivities that make it nearly impossible for me to be around anyone who has used Tide in the last two years. I grew up in the very Love Canal-ish landscape Sandra Steingraber wrote about in the seminal work on pesticide poisoning, Living Downstream. I also don't discount the importance of complimentary treatments or a good diet. My Mom opened up a charming, community-oriented health food store when I was a child, and I worked there for most of my working life until disability forced me into 20-something retirement. I sold supplements like a pro by the time I was fifteen. And, in 17 years of illness, I have tried almost every complimentary treatment imaginable for ME/CFS: Reiki, acupuncture, shiatsu, craniosacral, chiropractic, homeopathy, and many more. I have even grown my own medicinal herbs and made them into tinctures, and I treat myself regularly with moxabustion and other techniques I learned in shiatsu school. I eat an organic, yeast-free diet, I take handfuls of supplements, I meditate, I get regular acupuncture and juice and do a modified Gerson therapy for detox -- and I have gotten sicker almost every year of the past 17 years. I now have, by anyone's account, almost no quality of life.

Mike Adams, of www.naturalnews.com, reminds me of those less-adventurous activists in the 60s who simply sold anti-war buttons instead of doing real protests. His article, "There's no such thing as a virus that causes chronic fatigue syndrome" states that the discovery of XMRV is but a conspiracy to pad the pockets of "Big Pharma." "Before long, that vaccine will be added to an ever-growing list of other vaccines already being forced onto the population, and the whole thing will be framed in the language of 'public health,'" he writes.

I'm always a little surprised when I scroll down to the comments of such an article and read about people's outright rejection of science because someone has uttered a catch phrase like "vaccines forced onto the population." But the public outrage seems to spin out of those catch phrases, distracting everyone from reading the more lucid articles that put the XMRV discovery into a rich context of funding scandals, ongoing science, and patients with oxygen tubes up their noses. Sure, there is plenty of conspiracy to fixate on regarding XMRV, but it has little to do with Big Pharma. I'm not advocating dangerous vaccines, but I also want to correct Adams on the facts. For one, the FDA has never approved a drug for ME/CFS. The one drug pending approval for this illness, Ampligen, has been held up by the FDA for the entire time that I have been sick, even being yanked away at times from the few patients getting it under drug trials and compassionate care. In fact, the FDA even rejected it as a booster for the H1N1 vaccine after it was found to be a useful additive against swine flu.

So to connect the suffering a ME/CFS patients who have no proven, viable drug treatments with the H1N1 vaccine frenzy is pretty outrageous. Also, the Whittemore-Peterson Institute, which made the connection between XMRV and ME/CFS, is a privately-funded, nonprofit institute that was started by a family so frustrated by the lack of money being put into research around this illness, as they watched their child lose her teenage years and her 20s to the ravages of ME/CFS, that they started a research facility. Lastly, Judy Milkovitz (the Whittemore-Peterson researcher who spearheaded the research) made an intriguing statement to The Huffington Post about how XMRV could make people more succeptible to toxic vaccines, rather than the other way around. She said:

"This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes -- the immune response cells, the B and the T cells. So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That's its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you've now broken the balance between the immune response and the virus. So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency."

So the idea that Big Pharma wants to put their greasy hands on ME/CFS just to make a vaccine is a little hard to comprehend, given their complete disinterest is an epidemic for decades. But what about the financial investment of complimentary medicine and supplements-of-the-week in this untreatable condition? I'm not surprised that Dr. Jacob Tietlebaum, who has made a small empire out of precariously blurring the lines between ME/CFS and idiopathic "chronic fatigue" and fibromyalgia, and sells his own line of supplements and a methodology embraced even by O Magazine, has also joined the "Big Pharma is the villain" ranks. On his blog, he writes about the unusually large amount of media attention XMRV has received: "Why else might this research get more attention? Could it be because the AIDS drugs used for that virus cost over $10,000 per year (multiply by over 2 million in the U.S. alone with CFS = $20 billion = CaChing!), and I suspect this will help to push it along. An exercise in how things work."

I always find it mind-boggling that doctors who sell expensive products out of their own offices (or from snazzy websites) can claim to be so financially divested. After I edited a published anthology on ME/CFS, my inbox was loaded with testimonials from people who had been "cured" from "chronic fatigue" using complimentary treatments that usually had a very obvious pyramid scheme printed under that ominous eye of their dollars. I'm not saying many of those treatments are not useful -- but to scare people away from conventional medicine when nothing else is working is another form of corrupt medicine. Some of the Big Pharma companies that now make and market nutritional supplements as well as drugs include Wyeth, BayerHeathCare, Unilever, Novartis, and GlaxoSmithWelcome. Sure, some people may run out to get the H1N1 vaccine, and others may just take one of these company's Vitamin D supplements for flu prevention. The difference between those two group is that the second one thinks itself renegade.

Patients of other illnesses, who may be utilizing antibiotics, antivirals, painkillers, and sleep medications along with their supplements, should not be in denial about whose agenda they are serving when they call ME/CFS a "wastebasket diagnosis." The term chronic fatigue syndrome, as Hillary Johnson has written about brilliantly in her speech "The Why," was simply a brand name designed to create the very vagueness that has led to spin-off terms like "wastebasket diagnosis" and the blurring between idiopathic chronic fatigue (which affects up to 25 percent of the population) and ME/CFS (a devastating illness compared to the late stages of AIDS). As Johnson describes how the illness was named with the very purpose of detracting attention from an infectious etiology:

"Another investigator said, 'I prefer the term 'chronic fatigue syndrome' over 'chronic mononucleosis' because the latter implies an infectious etiology.'

And in every case, that was the crux: these collaborators voiced their antipathy toward lending the disease a presumed infectious etiology.

The public needed a big fat tranquilizing dart. This was crisis management, remember? 'CFS' soon emerged as the favorite.

Defending the agency’s choice to a large patient group, Holmes wrote:

'We believe that the use of such names as neuromyasthenia and myalgic encephalomyelitis are overly complicated and too confusing for many nonmedical persons.' Moreover, he continued, the name CFS, 'does not imply a specific association with any known etiologic agent.'

Are we talking science? No—We’re talking public relations; crisis management; branding."

Actual greeting card sold in the 1990s

So I'd like to suggest that something much more insidious is going on with XMRV than "Big Pharma" and "forced vaccines" trying to squelch our medical freedom. Consider, for example, that the two kingpins in the government's efforts to hijack public awareness of ME/CFS and rebrand ME/CFS as a vague, hysterical ailment both went on to hold prominent positions in the fields of mind-body and/or alternative medicine: Stephen Straus, who led the NIHs denialist program of ME/CFS for many awful years went on to direct the National Center for Complimentary and Alternative Medicine with a 90 million dollar budget, and the CDCs ME/CFS program head William Reeves slithered his way into Emory University's Mind-Body Program. I don't think this is an accident. These guys, after all, showed no previous signs of having an Allen Ginsberg-level interest in mindfulness, nor even a hobbyist's fascination with sprouting. I really doubt that Straus or Reeves has ever shopped at Whole Foods. And I don't think they took those positions to squelch alternative treatments, but rather to use what they had already learned about crowd control to combine the patient-blaming tactics of their previous programs with the pathogen-blurring language of these new fields. When complimentary medicine folks write blog rants about vaccines and XMRV, believe me, Reeves is not threatened: he smiles knowing he has taught his Manchurian Candidates how to use diversionary grenades.

I see clever linguistic marketing here. In the 1980s, ME/CFS was laughed at as a "Yuppie flu," a notion that worked well in a period of proletariat-driven recession outrage. In the academic, identity-politics obsessed 1990s, ME/CFS was labeled a form of "fin de siecle [end of century] panic" and "hysteria" by a Princeton academic (a self-proclaimed "New Hysterian") named Elaine Showalter, who also managed to laugh at Veterans and people with memories of childhood abuse as she went around the talk show circuit. Then, in the new milenium, when even young women like Elizabeth Smart began to speak courageously about how their memories of abuse were not false and not wrongly remembered -- with their fathers standing proudly beside them, when women began to proclaim that their neurological deterioration didn't feel like fin de siecle panic any more, the tactics became both subtle and ridiculously brash, a tone that sounded a little like "it's not that we think you're crazy or hysterical, it's just that we think you should do cognitive behavioral therapy -- but not because you're depressed. We're sure some of your symptoms are valid: feelings, too, are valid. So have some Xanax."

Sometimes a moment in history perfectly whitewashes people's bigotry, making their uncomfortable feelings of disgust toward a group more palatable because they have now the right, condescending language in which to articulate their prejudices without looking bad. In an interview with the New York Times in 2001, Stephen Straus introduced America to the new millennium's language of ME/CFS as he talked about his position at the National Center for Complimentary and Alternative Medicine:

"Q. You've had a career of being very much 'where the action is' in biological research -- studying, among other things, the herpes virus and chronic fatigue syndrome. On the latter, can you answer the million-dollar question: does it exist?

A. Of course it does. But what is 'it'? Is it a single disease? I don't think so. Is it caused by an infectious agent? Very unlikely. There isn't an infectious agent involved in sustaining the disease, as opposed to being a trigger for it. I think what we're calling C.F.S. might be the common pathway of how our body expresses a series of assaults on it. Some might be physical stressors and some might be emotional.

What's important about C.F.S. is many people get over it. Individuals who have it for many years lose hope. They then take on a series of maladaptive behaviors which sustain their illness because they become so focused and so phobic: they avoid exercise, disrupt their sleep patterns. It gets harder and harder for them to regain normalcy."

Welcome to the new millennium, when ME/CFS is just a series of maladaptive behaviors causing languor in rowboats -- this appeared at the Sydney International Airport before the 2000 Olympic games. Photo credit: A. Gotsis

Straus' slick statement that "C.F.S. might be the common pathway of how our body expresses a series of assaults on it" is one that is being repeated frequently in this era, particularly by writers interested in complimentary and alternative approaches to ME/CFS. How, exactly, is this scattering of the center any different from how wolves hunt prey? What Straus posits as the it-not-it of ME/CFS cleverly nullifies the very it he is speaking about. Which master's tool is this idea of the it-non-it, and why was it being used a decade after a retrovirus was found by Elaine DeFreitas in ME/CFS patients, which could have presented the same kind of unified theory that AIDS got when HIV was discovered, which could have led to (allopathic and alternative) treatments for this illness eighteen years ago?

Straus' seemingly non-centrist it-non-it approach seems to appeal greatly to people with a complimentary bent, who want to embrace the holistic reality of environmental poisoning and other horrors in our modern world. But I'm not sure this non-centrist approach reflects the tradition of complimentary medicine. Sure, Traditional Chinese Medicine is often known as the web that has no weaver, but it still recognizes heat. It still recognizes pulse diagnosis. And someone is feeding the fire here, both of this illness and of the propaganda around it. Who is the weaver, the man who can throw in words like "phobic" and "maladaptive" and "stressors" that "might be emotional"? He's a man engaging in hate speech, who would sound perfectly at home at a eugenics-conference-turned-New-Age-convention. Moreover, it is just a short causeway between Straus making those statements in 2001 and William Reeves publishing psychiatric-driven ME/CFS research in 2009, many years after thousands of published papers have documented not only a non-controversial physical etiology, but a very severe and extraordinarily disabling one. I hesitate to even use the word "controversial," since the government's propaganda machine has been so successful in infiltrating the media with that word that most articles on XMRV and ME/CFS are still using it, acting as if the "controversy" wasn't settled decades ago. This, again, is a scattering technique of it-not-it, not to be confused with Zen no-self, and not to be confused with any technique that is mindful enough to see through bullshit.

As Hillary Johnson wrote in "The Why":

"'Hate speech is intended to degrade a person or group of people based on race, gender and also including disability or any other distinction that might be considered a liability. Hate speech incites acts of discrimination against the victims of such speech. Think of all that is denied M.E. patients as a result of being characterized as malingerers, attention-seekers, neurotic and emotionally weak, or as David Bell says, 'Nutballs and fruitcakes'?

How did the Soviet Union discredit its dissidents? It called them mentally ill. Labeling M.E. a psychiatric disorder is a political act, a form of social violence. Once people are so labeled, their authority is stolen; their credibility destroyed, their civil rights jeopardized. Books comparing their disease to fantasies of alien abduction are taken seriously but their objections are not.

CDC science is not legitimate science. It is the science of defamation, of marginalization, of disenfranchisement. It’s Nazi science, its eugenics, and it’s a disgrace."

Just this year William Reeves coauthored the following papers in scientific journals: "Psychiatric Comorbidity in Persons With Chronic Fatigue Syndrome Identified From the Georgia Population," "Childhood Trauma and Risk for Chronic Fatigue Syndrome," "An evaluation of exclusionary medical/psychiatric conditions in the definition of chronic fatigue syndrome," and "Are chronic fatigue and chronic fatigue syndrome valid clinical entities across countries and health-care settings?" Is it just me, or do these seem pretty far afield of the Dalai Lama's interpretation of mind-body connections and a little closer to how the ex-gay ministries used to talk about curing gays?

Thanks to this slick transition between subtle patient-blaming under the guise of alternative medicine to all-out psychiatric assault, the new millennium became a time of warmer, fuzzier-sounding hate. Hillary Johnson added:

"The crisis management approach to this epidemic stayed the same, but the tone, the language, did change. Agency employees realized they couldn’t make jokes about the disease in public anymore. Compassion was the new stance. 'WE CARE' was the new message.

Aided by its now–very-large marketing and communications divisions, the CDC found a politically correct mantra to address the problem publicly. And it was this: The 'illness'—don’t dare call it a disease—'posed a dilemma for patients and their families.' That’s on their website right now.

Great PR wordsmithing: Convey compassion, but do not retreat from your position ."

To be told we have a vague diagnosis, that we're too stupid to resist Big Pharma and take a homeopathic remedy, and that our profoundly disabling, life-destroying illness is a mere "dilemma" hits the ME/CFS community like any other hate speech. We have experienced rampant discrimination as a patient community because of such beliefs. So I ask my friends in the complimentary medicine community: please don't deny our Vietnam, the one Hillary Johnson just declared victory over -- don't throw it in the wastebasket because it doesn't jive with someone else's physical gestalt. Actual ME/CFS is, as CFIDS Association CEO Kim (Kenney) McCleary once said, like the first bars of Beethoven's Fifth Symphony: you know it when you hear it. There is nothing vague or wastebasket-like about ME/CFS when it has stolen everything you once loved and destroyed your chance at a career, at having babies, at traveling home to see your family. There is nothing vague about presenting with cardiac insufficiency on a test comparable to that of a Class IV heart failure patient, having another test that shows mitochondria energy production one-fourth of that of a healthy person, failing a tilt table test, having immunological abnormalities such as IgG subclass deficiency, and testing positive for various pathogens in the blood as I have done just in the last few years.

My greatest "dilemma" as a patient is that most of the medical establishment doesn't seem to care that I have almost died from this illness. One member of my own family, in a moment that can only be described as extremely Stepford, even asked me what I meant by death when I told her I was close to death from this. "I mean death death," I kept saying, but she could no longer understand what that word meant. And doesn't that say it all? That such PR helps the public embrace a comfortable denial about what they most fear?

When patients with ME/CFS hear our families speaking the language of Straus and Reeves, a language they read in some integrative medicine doctor's blog, or worse -- in some therapist's office who skimmed one tepid, patient-blaming article on ME/CFS in Psychology Today, we are destroyed. Patients talk about this with each other all the time, how our families will not care for us because they don't believe in the realities of our disability, how they have abandoned us, how they have broken our hearts and spoken to us with more cruelty than strangers. This is what I mean by tapeworm: you know the masters are good when they can get right into your living room. Isn't that the whole point of advertising?

So who is our real enemy? I am not afraid of Big Pharma because they have, at times, given me restorative sleep, and not the lulling, insidious cultural sleep that Reeves is putting out, but the kind that induces dreams.

So I plan to continue my cordyceps and cat's claw and acupuncture. I will keep doing my routine of complimentary therapies that is really helpful for certain aspects of my illness, but I will also let the XMRV research feed the first surge of hope I have felt in years. I love the idea one writer etched in my mind by comparing XMRV to satellite radio (XM) in a Winnebago (RV). Even though I may never recover to the point that I can do this, I often fantasize about traveling across America in an Airstream to see my Grandma who has Alzheimer's and now lives in a nursing home. Grandma won't remember the decades of disinformation, but I'll be glad for that erasure.

2009-10-09T13:35:00.000-07:00

ME/CFS and the Retroviral Elephant

In the ME/CFS community, since yesterday, there has been a swell of jubilation. This may seem odd to a lot of people considering that researchers just found something in our blood similar to HIV. None of us are shocked by this news because we've always known we had something like HIV, something serious and deadly, but we have had to face a surreal social gaslighting while simultaneously weathering the horror of a terrible, life-destroying illness. Dr. Mark Loveless once said that an ME/CFS patient feels every day significantly the same as an AIDS patient feels two months before death. Now that statement holds more weight: ME is to AIDS what vegetative is to death.

The discovery of a new retrovirus called XMRV in ME patients is the biggest news in the history of the ME epidemic (and yes, I'm fully claiming the term ME now, as all "CFS" patients can do, now that as Hilary Johnson says "Our Vietnam War Ended Today" and we can strip the shackles of this government's attempts to squelch, misname, deny, and otherwise ignore our epidemic). News of the ME/XMRV connection has spread around the world like wildfire. Stories have appeared in just about every major media outlet. ME/CFS lists are buzzing. Patients who have written about our lives, screamed about these horrors, fought for medical attention, and died due to medical and social and governmental ignorance and suppression now have our day.

Along with all of the latest news stories, I think it's a good time to revisit Neenyah Ostrom's 1993 book America's Biggest Cover-Up, which outlines fifty different physiological similarities between ME/CFS and AIDS. This book was published just a year after I came down with the "flu-like" (read: tsunami-like) illness that changed my life forever. When the "flu" hit, I was going through graduation proceedings at Oberlin College and then headed on a cross-country trip to San Francisco with my friend Jody and my partner Rachel. Jody and Rachel both still remember my surreal descent into a complex of symptoms so inexplicable I quickly felt like I was dying. While they were hiking the wilderness in New Mexico and Arizona, I was crumpled in the back of my car, dizzy and nauseous and light-sensitive and unsure if I would live. I was 23 years old.

Jody later wrote about this confusing descent for my disability hearing: "It was during the summer of 1992 that I first became aware of the severity of Peggy's illness. I was moving out to San Francisco with Peggy and another friend, and we had decided it would be fun to take some time and drive across the country in two cars. So for almost two weeks we were together 24-hour days. Peggy was fairly incapacitated throughout the trip from a combination of headaches, nausea, and flu-like symptoms. At the time I think we chalked it up to an allergic reaction to something in the Southwest, and encouraged her to push herself to keep up. At some point during the trip it became clear to me that she wasn't just being lazy or tired, but that she was physically unable to keep up and was already straining herself in a dangerous way."

Once we arrived in San Francisco, in June of 1992, I faced a city that had been decimated by over a decade of economic struggle (that was the year Bill Clinton was elected after 12 years of Republican government) and AIDS. While AIDS had informed my whole sexual development, since I hit puberty almost exactly when it hit the public sphere, I was not prepared for the reality of AIDS in San Francisco. Fifty percent of the gay men in the city were said to be HIV-positive then. An air of overcompensation permeated the Castro, where it was somewhat rare to see men in wheelchairs with visible lesions, though they did appear briefly before disappearing altogether, perhaps on a last hoorah, sometimes pushed by other gay men who were obviously just cruising on the job, smiling and flirting with other men as they pushed a sickly, dew-eyed, emaciated man up that terrible hill.

I worked briefly at the top of that hill, at Castro and 19th. It was my first job after getting sick and I was far too ill to keep it, at a health food store. The HIV positive guy who hired me, upon looking at my resume that stated that my hometown was Normal, Illinois, joked "you could run for President too!" since of course Clinton was hyping his origins of Hope (Arkansas). Another HIV-positive guy who worked there called his illness "the hiv," rhyming "hiv" with "give." Those guys were much more healthy than I was, as were most of the HIV-positive men who came into the store with special discount cards they got for being HIV-positive. They used these cards to buy weight gain powder, and other supplements that I noticed carefully, often buying the same ones after they left.

I could barely stand up. In fact, being upright had become almost impossible due to increasing dysautonomia, so having a job that required standing for eight hours at a time was not something I could continue. I somehow made it through a little over a month there, working only four days a week with chest pains and flu-like symptoms and a skyrocketing heart rate, and sleeping most of the rest of the time. During that month, I saw my first ME/CFS doctor, who was actually a well-known AIDS specialist -- Jon Kaiser, MD. I had gotten his name thanks to a brochure for the CFIDS Foundation that had been sitting in Lyon-Martin Health Center when I went there right after realizing I was too sick to go on, a few weeks after my arrival in San Francisco. Interestingly, Lyon-Martin had been associated with an earlier ME/CFS cluster outbreak -- which I did not learn until reading Osler's Web -- but the only residue of that outbreak was this little brochure in the entryway. The doctor at Lyon-Martin was useless: she told me that I would be better in a few weeks and should come back for a Pap smear.

Dr. Kaiser, the AIDS doctor, did not diagnose me with ME/CFS -- he ran up lots of expensive tests I could not afford and bankrupted me, then tried to sell me affirmation tapes. I didn't know at the time that the CDC required patients to be symptomatic for six months or more for an official diagnosis. Dr. Kaiser wrote that I had "fatigue and chronic pharyngitis" in my chart, but interestingly did prescribe me his typical regimen for immunocompromised ME/CFS and AIDS patients. Perhaps most notable about this was the fact that he gave ME/CFS and AIDS patients most of the same supplements. They were the ones the HIV-positive guys bought at the store, such as this product called Resist. I was careful to buy mine (using my employee discount) when nobody else in the store was watching, lest they think I was hiding a secret HIV status. I could not afford to see Dr. Kaiser more than a couple of times, and then spent the next two and a half years in diagnostic limbo until finally getting diagnosed with ME/CFS by a Harvard-trained infectious disease specialist (who also saw a lot of AIDS patients) on the East Coast. That was in 1995, right before I went on disability and my work days were over for good.

I was very aware then that I had something AIDS-like, but had tested negative on HIV tests -- and I had had two of them over the course of a year just to be sure (my college was known for bisexual experimentation of all genders). My jobs after the health food store did not help me avoid the reality of AIDS: it was always, in San Francisco pre-cocktail drugs, in everyone's face. At the same time, as a 20-something, I didn't relate to the stories of loss told constantly by the 30-somethings and 40-somethings who had lived in the city for years and lost most of their friends. I just knew I was deathly ill too, and there was no place for me -- no place for people who had non-AIDS. In my two and a half years in San Francisco, while I struggled to make income despite being too sick to work at all, I worked with others who had been touched by AIDS. One job was for an HIV-positive psychotherapist who led support groups for HIV-positive men focusing on survival strategies. He paid me to do library research to compile a bibliography on all that had been written about the characteristics of long-term survivors of HIV and AIDS. He lived in a gorgeous, open, lonely-seeming apartment, where I remember seeing a stack of humorous 'zines titled "Diseased Pariah" on a ladder that seemed to go nowhere.

I also worked for a blind writer who had lost her beloved son to AIDS. Her son's wife had also died of AIDS, and the writer -- then in her 80s -- had stepped in to raise her orphaned granddaughter just as her blindness was developing. It was a remarkable story that she was too traumatized to tell the whole time I worked with her -- I learned the story from the gay guy who had hired me for the job, and later from an oral history tape the writer had given me to transcribe. A fascinating former radical who told me she had once had a run-in with the McCarthy committee, the writer lived on Haight street, perched in the third-floor apartment that she rarely seemed to escape. There, not far from the once-explosive Haight-Ashbury district where so many radical politics and arts were forged, blind and tamped with grief and left with only a paper menu from her son's old restaurant, she seemed emblematic of all that had gone wrong with the idealistic city of San Francisco.

I tried to hide from all of them how sick I was, because I had quickly learned that admitting illness in San Francisco would limit job opportunities. But I also sensed -- and perhaps I was wrong -- that they knew I was one of them, touched somehow by AIDS but not in the way they thought. I could tell that they sensed the gripping fear at the edge of my frailty, that perhaps they noticed how quickly I was losing weight, or the pallor in my cheeks. The writer, despite being blind, seemed to see right through everyone, and I found myself using body language that blocked her off when I was with her, so afraid she would do a third eye penetration of the truth that I was hiding. She was sad and a little angry when I moved away, so heavy already with loss, and I still wonder now if she knew what I didn't know then -- that I would never be well enough to return to San Francisco and would not see her again before she died.

After that, in Providence, I briefly taught a writing workshop out of my apartment for people living with chronic illness. One participant with a teenager with AIDS, whose story was absolutely wrenching and it seemed like he would not live to see his twenties. A couple of years later, I ran into him -- after the dispersion of the AIDS cocktail drugs. He was elated, about to travel to San Francisco -- his T-cells were great, his viral load was almost nonexistent now. How was I? he asked. I gently told him how my health was plummeting.

What is utterly mind-blowing to me now was how much the writings in those early days of my illness reflected an awareness of the ME/CFS-AIDS connection, and yet the research on retroviruses was, at the time, sidelined in favor of other avenues. I wrote in the Introduction to my book Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome about the SPECT scan research published by Dr. Anthony Komaroff and his colleagues in 1994, in which he compared SPECT scans of ME/CFS patients to those of people with unipolar depression, AIDS dementia, and a control group -- and ME/CFS brain scans looked almost identical to those of patients with AIDS dementia.

Perhaps most astonishing to me now is this quote I read in Ostrom's book, in which she talks about Dr. Paul Cheney's observations at the time about his ME/CFS patients who were dying of opportunistic, AIDS-like infections:

"Dr. Cheney described the immune system damage seen in CFS patients for the Food and Drug Administration in May 1993. Dr. Cheney told the FDA that five of his CFS patients had died during the preceding six months. Two of these patients committed suicide, which is all too common among CFS patients. But three of Dr. Cheney's patients who died, like AIDS patients, succumbed to overwhelming infections that their damaged immune systems couldn't fight off. But Dr. Cheney's CFS patients, like the ICL patients [those with HIV-negative, AIDS-like disease], appeared not to be infected with HIV, even though they developed AIDS-like immunodeficiencies and, in some cases, life-threatening opportunistic infections."

I have spent the last five years nearly dying from opportunistic infections, including a bartonella infection that took an AIDS-like course in my body and produced rampant cardiac and neurological damage, so this quote rings heavily for me. I have been in ME/CFS hell for seventeen years, and in the past five it has become more and more harrowing as I have flirted increasingly with death, particularly over the past year (I have finally recovered enough to write this blog post -- barely). I have become -- and hopefully will be well enough to write more about this at some point -- like the other patients who are dying or have died, and who look exactly like AIDS patients. It would be hard to look at pictures of some of my wasting ME/CFS friends and deny the ME/CFS-AIDS connection. Yet as I pleaded with an idiot doctor as I was dying of a heart infection from bartonella, begging him for antibiotics, and moreover showing him articles about the behavior of bartonella infections in HIV-positive patients to explain why I was so sick, he ignored me until I almost died.

Now, on his current blog, Dr. Cheney is taking a more understated approach than he did in the early '90s, but his statements seem to imply that bartonella -- as a common coinfection of Lyme -- may be just another opportunistic infection that attacks ME/CFS patients because of a retrovirus-damaged immune system. "I have not really seen what I would call a pure Lyme case but many with CFS and a positive Igenex WB assay and antibiotic failure for chronic Lyme," writes Cheney about the XMRV virus discovery.

Dr. Cheney may seem nonplussed by this new discovery since he has witnessed these connections all along. As I wrote about the ME/CFS-AIDS connections in my essay "The Paradox of Lost Fingerprints" in Stricken:

"It cannot be underestimated how much AIDS politics both eclipsed and influenced the lives of CFIDS patients. Many writers have also pointed out bizarre and alarming connections between the two illnesses -- such as similarities in brain scans and elevated HHV-6 titers. Dr. Paul Cheney, though, noticed what is perhaps the most remarkable correlative. When he entered data for 400 CFIDS patients into a computer, noting their time of onset and other factors, he found that CFIDS and AIDS cases have occurred -- over time -- at almost parallel rates of growth. But AIDS medical psychology also dramatically affected CFIDS patients. In the rhetoric of the AIDS years, people were taught to view illness as an outcome of behavior. Every illness in this era was shaped by the furor of AIDS politics. Even [Elaine] Showalter talked about CFIDS and Gulf War syndrome as 'sickness lifestyles.' This description was not unlike the homophobic AIDS rhetoric that confused gay 'lifestyle' with succeptibility. Once contagion was equated with behavior, and identity politics took over, pairing of illness and identity was almost inevitable. A strange contradiction emerged in this era when words such as 'multiculturalism' entered the public arena -- the need to identify, along with the need to believe in the transcendence of inborn identity." [117]

While AIDS patients got drug cocktails, ME/CFS patients got metaphors -- often offensive, derisive, and soul-crushing metaphors. Those metaphors and the cruel cultural bullying around patients can certainly help explain the two patients Cheney mentioned who committed suicide: now we finally have an explanation for the other three who died of AIDS-like opportunistic infections. The patient-blaming approach can also be blamed for other deaths that weren't suicides, such as the tragic death of Sophia Mirza who was forcibly sectioned to a psychiatric hospital for having severe ME and never recovered from her hospital stay, ultimately dying. As Ostrom wrote in 1993, " Is it possible that a mistake has been made in formulating the definition of AIDS? Is Chronic Fatigue Syndrome actually part of the AIDS epidemic? If this is even a remote possibility, why haven't other books been written about it? Why isn't every health reporter in the country writing about it, every investigative reporter investigating? The answer, I believe, is pretty simple, and it is a problem that has dogged the AIDS epidemic since the beginning: denial." I think we can now acknowledge that people like Mirza have died from this denial, and hopefully prevent more suffering and death.

At the first free medical clinic in America without a religious affiliation -- the Haight-Ashbury Free Clinic -- the motto "Health care is a right, not a privilege" was popularized, the year before I was born. It is not too late to actualize that motto for ME/CFS patients who have spent decades dealing with biased medical care. My blind writer friend on Haight Street said it best to me when she told me how much she hated the parable of the blind men and the elephant. She felt like that parable was an insult to the blind, who actually cultivate their senses, who look further to see the elephant that was there all along. She made it seem so simple, to cultivate awareness of the obvious, to deal with exactly what is there. Hopefully the medical establishment will listen now, to this retroviral elephant that can't be ignored.

NEWS COVERAGE

Oslers Web.com

Our Vietnam War Ended Today

By Hilary Johnson

Action for ME

Researchers find virus in blood cells of CFS patients

09 October 2009

Researchers at the Whittemore Peterson Institute in Reno, USA have
identified genetic material (DNA) from a mouse virus - murine leukaemia
virus-related virus (XMRV) - in 68 out of 101 CFS patients (67%)
compared to 8 out of 218 (3.7%) of healthy people.

Further
blood tests showed that more than 95% of CFS patients have antibodies
to XMRV, indicating they had been infected with the virus, which may
then have lain dormant in their DNA.

Dr Judy Mikovits,
research director, Whittemore Peterson Institute, is testing a further
500 blood samples collated from patients diagnosed with CFS in London.

Although the sample is small, the results are very promising.

Sir Peter Spencer, CEO of Action for M.E., the UK's biggest M.E. charity, says:

"It
is still early days so we are trying not to get too excited but this
news is bound to raise high hopes among a large patient group that has
been ignored for far too long.

"If the researchers can go
on to prove a definitive cause and effect between this retrovirus and
M.E., it will make an enormous difference to 250,000 British men, women
and children who have M.E. in this country."

__________________________________________________________

Reuters News

Study isolates virus in chronic fatigue sufferers

Thu Oct 8, 2009 9:57pm BST

By David Morgan

WASHINGTON (Reuters) - A virus linked to prostate
cancer also appears to play a role in chronic fatigue syndrome,
according to research that could lead to the first drug treatments for
a mysterious disorder that affects 17 million people worldwide.

Researchers found the virus, known as XMRV, in the
blood of 68 out of 101 chronic fatigue syndrome patients. The same
virus showed up in only 8 of 218 healthy people, they reported on
Thursday in the journal Science.

_________________________________________________________

New York Times

XMRV
is a retrovirus, a member of the same family of viruses as the AIDS
virus. These viruses carry their genetic information in RNA rather than
DNA, ...October 9, 2009 - By DENISE GRADY - Health / Research

__________________________________________________________

BBC News Online

ME Virus Discovery Raises Hopes

Page last updated at 09:11 GMT, Friday, 9 October 2009 10:11 UK

US scientists say they have made a potential
breakthrough in understanding what causes the condition known as
chronic fatigue syndrome (CFS) or ME.

Their research in the journal, Science, suggests that a single retrovirus known as XMRV does play a role in ME.

They found the virus in 67% of ME patients compared to under 4% of the general population.

__________________________________________________________

The Independent

Leaing Article - Chronic Neglect

The symptoms are disabling
tiredness, irritable bowels, intense headaches, depression and
cognitive dysfunction. Yet for years many doctors argued that Chronic
Fatigue Syndrome didn't exist. They refused even to dignify it with the
name previous sufferers preferred – Myalgic encephalomyelitis. ME, they
said, was just "me" writ large and dismissed it as yuppy flu. In the
event the flu has lasted longer than the yuppies did. Some four million
people suffer from it in the United States alone.

Now two potential avenues
for cures come along at once. Researchers in Utah claim to have
discovered the gene involved. Another team in Nevada have found
compelling evidence that a retrovirus, like HIV, might well be
implicated.

__________________________________________________________

The Independent

Has science found the cause of ME?

Breakthrough offers hope to millions of sufferers around the world

By Steve Connor, Science Editor

Scientists say they have made a dramatic breakthrough in understanding the cause of chronic fatigue syndrome –

a debilitating condition affecting 250,000 people in Britain which for decades has defied a rational medical explanation.

The researchers have
discovered a strong link between chronic fatigue syndrome, which is
sometimes known as ME or myalgic encephalomyelitis,

and an obscure retrovirus related to a group of viruses found to infect mice.

___________________________________

Bloomberg News

Virus Linked to Prostate Cancer Is Also Tied to Chronic Fatigue

By Rob Waters

Oct. 8 (Bloomberg) -- A virus linked to aggressive forms of prostate cancer may

also be tied to chronic fatigue syndrome, a condition that saps people of energy

for months or years.

The virus, XMRV, was found in the blood of two-thirds of a set of tissue samples

taken from people with the condition and 3.7 percent of a group of healthy

individuals, according to a study published today in the journal Science.

_____________________________________________________________

Washington Post

Virus Associated With Chronic Fatigue Syndrome

Scientists have found evidence that a virus may play a role in chronic fatigue

syndrome.

Vincent C. Lombardi of the Whittemore Peterson Institute in Reno, Nev., and

scientists elsewhere studied 101 patients with chronic fatigue syndrome, a

baffling, debilitating and controversial condition that affects an estimated 17

million people worldwide. They discovered that 68 of the patients -- 67 percent

-- had a virus in their blood known as the xenotropic murine leukemia

virus-related virus or XMRV. Only eight of 218 similar subjects who did not have

chronic fatigue syndrome -- 3.7 percent -- had the virus in their blood, the

researchers report in a paper published online Thursday by the journal Science.

_____________________________________________________________

Reno Gazette Journal

Good quote from Anne Whittemore:

"Now we have scientific proof that this infectious agent is a significant factor

in ME/CFS," Annette Whittemore said. "Patients and their doctors will soon have

a blood test to verify their diagnosis and provide the answers that they've been

seeking."

_____________________________________________________________

Science News

Retrovirus might be culprit in chronic fatigue syndrome

People with the condition are much more likely than others to harbor a

little-known pathogen

By Nathan Seppa

The long, fruitless search for the cause of chronic fatigue syndrome has taken a

curious turn. Scientists report online October 8 in Science that an obscure

retrovirus shows up in two-thirds of people diagnosed with the condition. The

researchers also show the retrovirus can infect human immune cells.

_____________________________________________________________

the-scientist.com

Viral cause for chronic fatigue?

Posted by Edyta Zielinska

_____________________________________________________________

New Scientist

Chronic fatigue syndrome linked to 'cancer virus'

_____________________________________________________________

Google News

Scientists link chronic fatigue ailment to retrovirus

_____________________________________________________________

National Institute of Health

_____________________________________________________________

Scientific American

News - October 8, 2009

Retrovirus Linked to Chronic Fatigue Syndrome, Could Aid in Diagnosis

Recently implicated in some severe prostate cancer patients, the retrovirus XMRV

has now been found in many with chronic fatigue--changing the landscape for

diagnosis and possible treatment

_____________________________________________________________

Yahoo News

Study isolates virus in chronic fatigue sufferers

By David Morgan David Morgan 55 mins ago

WASHINGTON (Reuters) – A virus linked to prostate cancer also appears to play a

role in chronic fatigue syndrome, according to research that could lead to the

first drug treatments for a mysterious disorder that affects 17 million people

worldwide.

Researchers found the virus, known as XMRV, in the blood of 68 out of 101

chronic fatigue syndrome patients. The same virus showed up in only 8 of 218

healthy people, they reported on Thursday in the journal Science.

_____________________________________________________________

Nature.com

Virus linked to chronic fatigue syndrome

Prostate cancer pathogen may be behind the disease once dubbed 'yuppie flu'.

Lizzie Buchen

A study on chronic fatigue syndrome (CFS) has linked the mysterious and

controversial disease to a recently discovered retrovirus. Just last month

researchers found the same virus to be associated with aggressive prostate

tumours.

Chronic fatigue syndrome is seen as a serious but poorly defined

disease.PUNCHSTOCK

CFS is marked by debilitating exhaustion and often an array of other symptoms,

including memory and concentration problems and painful muscles and joints. The

underlying cause of the disease is unknown; it is diagnosed only when other

physical and psychiatric diseases have been excluded. Though the disease's

nebulous nature originally drew scepticism from both doctors and the general

public, most of the medical community now perceives it as a serious — if poorly

defined — disease.

Now Judy Mikovits of the Whittemore Peterson Institute for Neuro-Immune Disease

in Reno, Nevada, and her colleagues think they have discovered a potential

pathogenic link to CFS. In patients with the disease from different parts of the

United States, 67% were infected with a retrovirus known as XMRV. Less than 4%

of controls carried the virus.

_____________________________________________________________

Wall Street Journal

Retrovirus Linked to Chronic-Fatigue Syndrome

By AMY DOCKSER MARCUS

Researchers have linked an infectious virus known to cause cancer in animals to

chronic-fatigue syndrome, a major discovery for sufferers of the condition and

one that concerned scientists for its potential public-health implications.

_____________________________________________________________

Emerging Health

Emerging retrovirus turns up in new patients

Novel virus can spread between people, may lie behind other common illnesses

Electron micrograph of xenotropic murine leukemia virus-related virus (XMRV) in

the blood of a chronic fatigue syndrome patient.

Source: Whittemore Peterson Institute

A retrovirus first seen in prostate cancer patients three years ago has now been

discovered in the blood of people suffering from chronic fatigue syndrome (CFS),

Vincent Lombardi and colleagues report1 today in Science. The virus can be

passed on from person to person and may be linked with other health conditions,

experts say.

_____________________________________________________________

www.physorg.com

Scientists link chronic fatigue ailment to retrovirus

October 8th, 2009 in Medicine & Health / Diseases

_____________________________________________________________

www.livemint.com

WHITTEMORE-PETERSON INSTITUTE

QUESTIONS AND ANSWERS ON ME/CFS AND XMRV

__________________________________________________________

From America's Biggest Cover-Up: 50 More Things Everyone Should Know
About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS by
Neenyah Ostrom, published in 1993

"This book will attempt to
attempt to answer not only that question, but also other, potentially
even more alarming, ones: Is CFS actually part of the AIDS epidemic?
Are CFS and AIDS, in fact, the same illness?

Since the Berlin conference, for anyone interested in observing it,
evidence linking these two refractory epidemics, AIDS and Chronic
Fatigue Syndrome, has continued to accumulate.

Anxiety about the direction of AIDS research had really begun at the
previous international AIDS conference, held in Amsterdam in 1992.

The bombshell of 1992's AIDS conference was the announcement that some
researchers had identified cases of AIDS without evidence of infection
with the 'AIDS virus,' HIV.

These 'non-HIV AIDS cases' had severely depleted T4 (or CD4) cells,
like AIDS patients; they also developed life-threatening opportunistic
infections.

What wasn't known to most observers was that one of the researchers who
had first publicly identified some of the non-HIV AIDS cases, Dr.
Sidhur Gupta of the University of California, Irvine, is a Chronic
Fatigue Syndrome researcher.

And some of the non-HIV AIDS cases, it was soon revealed, were actually CFS patients.

Shortly after the June 1992 AIDS conference in Amsterdam, Chronic
Fatigue Syndrome researcher Dr. Paul Cheney announced that he had 20
CFS patients in his practice who had the same immune system
deficiencies as the non-HIV AIDS cases.

The hallmark of the HIV-negative AIDS cases, as defined by the Centers
for Disease Control and Prevention, is a depletion of the T4 (or CD4)
cells.

. . .

How can AIDS exist in the absence of the virus that causes it? None of
the AIDS researchers gathered in Amsterdam in June 1992 seemed able to
answer that question.

. . .

Dr. Cheney described the immune system damage seen in CFS patients for
the Food and Drug Administration in May 1993. Dr. Cheney told the FDA
that five of his CFS patients had died during the preceding six
months. Two of these patients committed suicide, which is all too
common among CFS patients. But three of Dr. Cheney's patients who
died, like AIDS patients, succumbed to overwhelming infections that
their damaged immune systems couldn't fight off.

But Dr. Cheney's CFS patients, like the ICL patients, appeared not to
be infected with HIV, even though they developed AIDS-like
immunodeficiencies and, in some cases, life-threatening opportunistic
infections.

. . .

Many researchers are attempting to create such a test for CFS. One
line of research that originally appeared to be promising involved
finding a retrovirus, like the virus that supposedly causes AIDS, in
CFS patients. Some researchers had believed that finding such a
retrovirus, and proving it causes CFS, would result in a definitive way
to diagnose this syndrome, as the HIV antibody test has done for AIDS.

But the 'CFS retrovirus' research apparently ran into some roadblocks,
and little progress has been made since the single report describing
the retrovirus was published in early 1991.

. . .

This takes us back to the original questions: Is it possible that a
mistake has been made in formulating the definition of AIDS? Is
Chronic Fatigue Syndrome actually part of the AIDS epidemic?

If this is even a remote possibility, why haven't other books been
written about it? Why isn't every health reporter in the country
writing about it, every investigative reporter investigating?

The answer, I believe, is pretty simple, and it is a problem that has dogged the AIDS epidemic since the beginning: denial."

2008-12-14T10:55:00.001-08:00

The Ice Storm

I know this ice storm in New England was potentially lethal for everyone, but the past few days were harrowing for me. I turned 40 on Wednesday, and on Thursday night the power went out – and stayed out for almost 48 hours. The temperature was around 15 degrees Fahrenheit or less at night and for much of the day, and my life turned into a Jon Krakauer novel very quickly. With multiple chemical sensitivities (MCS) everything is inaccessible (so if you’re an EMT, firefighter, hospital worker, M.D., nurse, or shelter worker, think about this). Calling 911 is generally out of the question, emergency rooms are full of toxic cleaning chemicals and scented people, and the carbon monoxide from generators or the toxins from wood smoke can be particularly dangerous or lethal (and hotels: forget about it). Because I was weak and sick going into the outage, I was suddenly like that guy in Into the Wild – picture the end of the movie version of the book – who has eaten the poisonous seeds by accident and thus orbiting around this tiny space, trying to stay warm, totally screwed. Fortunately, the power is back on, and I made it out alive. I might post more of the story at some point, but right now I’m just waiting to hear from some other sick friends who are in other parts of Western Mass. and don’t have power and/or power and phones. I just want to remind everyone to think about vulnerable neighbors this Winter, and don’t assume people don’t need more help. The kindness, action, and advocacy of both friends and strangers got me through the past couple of days (and I can't thank them enough), but it was pretty hairy for awhile, and I know how easily people’s needs can be forgotten when the world assumes that everyone can get to a shelter, hospital, or friend’s house. This video was shot some distance from where I live, but it depicts pretty much what the scene looked like here (I can’t find much footage on YouTube from W. Mass., probably because people are just getting their power restored). Beautiful, awe-inspiring, and scary:

Lots of trees and tree branches were blocking the roads in W. Mass.:

2008-11-15T16:17:00.000-08:00

The lovely Susie Bright interviewed all of the authors of her new anthology, X: The Erotic Treasury, which is a very sexy coffee table book in lush packaging that has come out just in time for the holidays.

Here is the interview Susie did with me!

Peggy Munson
"Fairgrounds"
http://www.peggymunson.com/

Have you ever won an award for any of your talents?

I was a finalist for the Lambda Literary Awards in Lesbian Debut Fiction -- then censored by Lambda because my work was dubbed "too straight."

I also won the spelling bee in elementary school, ultimately choking on the word "gangrene" at regionals.

Tell me how you would cast the film version of your story... just for fun!

Lead Girl: Chloe Sevigny
Daddy Billy - I would do a cattle call for a gruff no-name butch stud
Octopus Man - William H. Macy
Octopus Man's Girlfriend, Cherry - Kathy Bates, wearing something spandex-y from Target
Octopus Boi - Rufus Wainwright playing a disabled tranny boi
Random Carnies - Other Wainwrights

What kind of reactions have you had to your story? It apparently became a big deal on a locked bulletin board for amputee fetishists...

As far as I could tell, amputee fetishists were doing untoward things with prosthetics while rolling around on a giant Braille scroll of my story -- or something like that (sadly, I never got in either)!

As for reactions, someone turned the story into an incredible dirty poem. It was translated into Italian. I performed some similar work by video later at a couple of disability-focused erotica events.

What is your own life "in the circus"? Did you like carnivals as a child?

My own experience with carnivals looked a lot like David Foster Wallace's essay on the Illinois State Fair.

Those Illinois fairs (the McLean County fair, the Kroger parking lot fair, the annual Corn Festival) spelled out my budding erotic: mostly the image of the 4-H tent with its neat stitches and carefully hemmed adolescent desires swirling around absurdly delicious cakes and then abutting the swine tent with unapologetic grit and dropped corn dogs covered in Carny cigarette butts. My whole erotic feeling is something akin to picking up the dropped corn dog, taunting the swine, eating as much cake as possible, then letting out those so-perfect seams.

What's so hot at those fairs is the sense of hemmed chaos that is about to break, as the footpaths get rutted and muddy, the carnies lose their patience and do sadistic things with ride gears, and the cut-off jeans get snagged on teenage lust.

Do you hear from people saying, "Oh dear, you're making our oppressed minority look bad, can't you be more sensitive...." or is that era over?

Frankly, I don't think disabled folks ever even got enough recognition to get on the p.c. radar.

I took a course at Oberlin called "Theorizing Race, Class, Gender, and Sexuality in Contemporary Capitalism," where we sat around in a circle talking about the intersections of our so-called oppression— but disability just did not exist.

Disability has always been in a fringe space, fringe mainly because it is all about the body and all of the aspects of the body that freak people out. So disabled people usually don't get worked up about radical sex because they are used to their bodies being put under the most literal microscopes, poked and prodded and subjected to telethon-esque social freak shows. Even the conservative disabled bodies are just, on some level, living a queer sexuality.

So when someone comes along and writes about disabled bodies seizing pleasure, disabled folks are generally psyched about the visibility and the notion (not often shared by social institutions) that sexual pleasure is their birthright.

In contrast, even the most open-minded sex radicals sometimes flinch at the idea that some people find prosthetic legs as hot as prosthetic cocks, insane levels of transcendence can bloom out of physical restrictions, and injured young veterans are damned well going to fuck their girlfriends when they get out of the rehab hospital.

I was just re-reading a 1999 essay by Patrick Califia in which he talks about how, when he became a sex writer with an acquired disability, people were "so overwhelmed by cognitive dissonance because of my disability that they've literally tried to take the cane away from me."

Do you think limited mobility and kink have any special understanding together?

This is a fantastic question -- and yes! I was thinking about how, with an illness characterized by immobility, it's so hot for me to hear a partner snarl "hold still" or "don't you dare move" — or even just to move my limbs around like a ragdoll.

It's something about recognizing all of the receding corners that are in a person --whether those are dark fantasies, literal parameters, or limits that can be pushed a little bit.

Lovers who never fuck in rote mode, who just learn where the lines are and exactly how to thrill on those tracks, are the hottest lovers ever. Plus there is the inherent social queerness of disability that just makes it kinky. There is also a discipline that can come out of sex with a disability, a honed Zen-like awareness.

Imagine you have pain all over your body, and what it means for a lover to just run a finger along the one place you feel pleasure, the increased valuation of that pleasure in contrast to your daily life. Disability also often forces reinvention, which can just make even the most placid activity kinky.

I have had to study all of the textures of stillness. Lovers have appreciated both how embodied I have to be because I have to stay attuned to my physical status, and how non-literal I am about the body at the same time, because I'm used to adding and subtracting extensions to the flesh in all sorts of ways.

What comes to mind when you consider your ancestors?

My aunt did some genealogy and found abolitionists as well as Amish in my family tree, which explains why I think this Amish tradition called "bundling" is really hot (it involves lying with someone under a quilt and seeing how long you can resist temptation).

My recent ancestors on Mom's side were Germanic farm stock, John Deere to the marrow, and I grew up the youngest grandchild of some huge farm families that had amazing. My Dad was part of the local media (with the morning radio drive time shift) before everything went corporate. My aunt worked as a criminal pathologist at the LA County Coroner's Office, which handles most of the famous Hollywood autopsies, and this always brought a freak element to holiday dinners, when it wasn't unusual to hear about an autoerotic asphyxiation case while Grandma was dishing out mashed rutabagas.

2008-10-22T14:02:00.000-07:00

The candidates are talking about it, the pundits are talking about it, everyone is pointing fingers and assigning blame, but it turns out Billy Joel was right – the epicenter of the problem is somewhere near Allentown, PA. Yahoo News reports that Elizabeth Feudale-Bowes, aka the woman in "the bubble," is causing real estate values to tumble in her neighborhood, creating a ripple effect that is scarring the whole nation.

Feudale-Bowes lives in South Whitehall township in what looks like a modern steel-and-porcelain shed, not so different from what you would pay a hefty sum to purchase if you were buying it from a hipster shed company such as MetroShed. Granted, her accessory dwelling has a little bit of a 4-H agricultural tent feel to it, but the environmentally-safe 160-square foot residence is more aesthetically pleasing than most safe dwellings I have seen (and certainly most dilapidated sheds). Paranoid neighbors are terrified that Feudale-Bowes living space is "unstable and so unsightly it could drag down their property values" and thus a judge has ordered her to tear it down by the end of the month, citing permit violations.

What was the name of that 4-H animal that was smeared with blood and sent to the edge of society to repent for their sins? Do these neighbors not realize their property values are plummeting for reasons other than a sick woman living in a structure slightly bigger than an animal pen?

Feudale-Bowes has environmental illness, aka multiple chemical sensitivities. She was diagnosed by the nation's preeminent MCS specialist, Dr. William Rea – a man so heroic that, like many doctors with MCS, he has been living under threat of having his license revoked. Many people with MCS appreciate Feudale-Bowes shantytown style of architecture, since they spearheaded the green shabby chic movement that has been co-opted by many small-scale green builders. A number of people with MCS in fact live in makeshift structures in a makeshift community outside of Dallas, for the sole purpose of seeing Dr. Rea for medical care. Their "homes" are typically old pull trailers that are lined inside with many coats of special sealants designed to seal in chemical components, or special builder's foil and foil tape, often with some of the soft innards ripped out, perhaps replaced by steel box springs and organic blankets.

Many MCS patients are not lucky enough to afford adequate housing or medical care and live like refugees, driven out of their homes by building toxins and forced out of society by the toxins in daily products. They live in their cars, in wire cages, in tents, or in renovated trailers (homeless shelters are not fragrance and chemical free and thus inaccessible to people with MCS). The Environmental Health Coalition of Western Massachusetts did a survey and found that 57 percent of people with MCS had been homeless at some point since becoming sick. I don't know that there is any other population in America that rivals this level of homelessness, but the problem is not being addressed. A friend of mine, who finally found refuge in one of the few places with MCS acceptance, left me a tearful message the other day in which she said, "I am not living like a refugee – for the first time in my adult life." This friend was homeless for years due to MCS.

A few lucky patients have eventually found the means (typically after many years of struggle and loss) to either renovate homes to MCS-safe standards (as I have done) or build nontoxic residences. However, people with MCS are still almost universally ostracized in their communities, and life with MCS is undeniably lonely. My PCA who has MCS mentioned to me yesterday that most of us with MCS have all been "labeled" in our small towns in Massachusetts. Hearing this made me so self-conscious. I'm not sure what kind of freak label I'm wearing where I live, because I'm so exiled from my community, but my interactions with the "outside" frequently remind me that my illness is barely being tolerated.

I still feel fortunate that I have no neighbors within eyesight of my front door, as my last dwelling was a small city apartment and I got very ill from the wood smoke and laundry vent fumes from my neighbors. Some of my friends with MCS have lived with hostile neighbors who knowingly sprayed pesticides or other chemicals in their direction, sometimes with expressed intent to drive them out of their neighborhoods. These were, of course, violent acts of assault but law enforcement wouldn't do anything about it. Those of us with MCS have come to expect neighborhood hostility. We often try and create a land buffer from neighbors so they can't harm us, live close to other people with MCS, or to try and educate our neighbors so they won't turn against us. We have the rare disability designation of knowing our neighbors could possibly murder or recklessly endanger us and get away with it. Someone in the MCS network is always under fire. I serve on the advisory board of an MCS organization that frequently receives letters from people with MCS who are being driven out of their homes and neighborhoods and don't know what to do. The stories are heartbreaking, because nobody is offering enough funding to create real solutions (Brad Pitt – are you listening?).

It is fair to say that Feudale-Bowes' neighbors are oozing with hostility in this article, although they keep reverting to the permitting argument. "Some neighbors question whether her ailment is genuine," reports the article. "But they and others say the main issue is the couple's disregard of the zoning rules." I hate to have to explain the ableist subtext here, but it's something like, "We don't believe that crazy lady is actually sick, so let's toss her out of her bubble and see if she vaporizes." Does this remind anyone of the Medieval ordeal known as "trial by drowning," in which women accused of witchcraft were thrown into a body of water to see if they would float – since witches were said to float -- and they would either sink to their deaths or be hanged or burned at the stake?

Feudale-Bowes does seem to have fairly severe MCS. She has to stay in her bubble 10 hours a day, even though she and her husband also own a Lustron house – a very sought after item in the MCS community. Lustron houses were built as wartime structures in the 1940s. They are made of prefabricated porcelain-enameled steel to go up quickly and last a long time, and steel and porcelain are often well tolerated by people with MCS. Most houses nowadays are built with wood (which, even in its pure forms, leeches terpines that MCS people often cannot tolerate), manufactured wood products (such as sheathing, which contains formaldehyde), tarred roofing, formaldehyde-laden cabinetry, toxic carpeting, vinyl-clad windows, and other products that outgas toxic chemicals into the living space, making them uninhabitable to people with MCS.

Even houses built without these products, or older homes that have already outgased, contain many hazards for people with MCS: pesticides, gas appliances, cleaning products, etc. The fact that Feudale-Bowes cannot even live in a Lustron house and had to attach and accessory dwelling probably means her MCS is severe. Chemicals are likely, as she claims in this article, life-threatening to her. At the very least they cause her excruciating pain and other symptoms such as "migraines, joint pain, bladder inflammation, seizures and temporary paralysis."

Dr. William Rea has written about MCS deaths caused by chemical exposures, typically involving organ failure. People with MCS know about and hear about such deaths, but the living typically keep a low profile: we don't want to be next. To say Feudale-Bowes is generally fearing for her life right now is, I'm sure, no understatement. Where else is she going to live? Winter is approaching, and it is not a good time to pitch a tent.

What exactly is infuriating these neighbors so much? According to the article:

Thomas Kelly, 53, who lives across the street, said that while he feels sorry for Feudale-Bowes, her husband "just did whatever he pleased."

"We don't live like that," he said. "We live in a society governed by laws."

But Feudale-Bowes said: "If I don't live like this, my pain level is so severe that I can't function, I can't live, I can't survive. It's excruciating."

It seems to be something about lack of conformity, about the individual's inability to adapt to "a society governed by laws" that often requires sellers to spray pesticides around the perimeter of a structure to pass a housing inspection, or requires green builders to jump through hoops to build a straw bale house. There is another term for a lack of biological conformity: disability. And disability is what seems to be irking this guy. Feudale-Bowes' husband, Craig Bowes, said plainly, "My wife's not a lawn mower, and I didn't put up an illegal shed just to mess with the township." His statement says it all: if his wife was a lawn mower, the public outrage might make sense, but she is not a lawn mower: she is a human being with a life-threatening condition and nobody is providing a viable housing alternative.

Moreover, and sadly, her neighbors know that she actually is, socially, a lawn mower: they can push her around with no recourse. Her threats to pursue this issue under the Americans With Disabilities Act will probably go nowhere, if prior MCS cases are any precedent. Until society decides that people with MCS are not lawn mowers, people with MCS will be treated like lawn mowers. Societies governed by laws are great unless those laws are, say, Jim Crow. Or Apartheid. Or other laws that categorically exclude some members of society.

Has anyone asked Feudale-Bowes or her husband why they didn't obtain the necessary permits to put electricity and plumbing into her structure? I can wage a theory. In my personal experience, finding a contractor who won't infuse the walls of my house with fabric softener stench for days or weeks on end is extraordinarily difficult. Fabric softener alone, to a person with MCS, is like a nerve gas bomb set off in the house. The odor sticks to the walls and it takes a long time to air out the structure afterward to make it safe. Fragrance molecules are designed to be "sticky" and leave a residue. Anyone who has ever bought a used car with fourteen cardboard air freshener trees hanging from the rear view mirror knows what I am talking about. Or perhaps an easier analogy for most people is cigarette smoke: it does not dissipate when the smoker leaves the building. A smoker's house will always smell like smoke.

Beyond the licensed contractor issue, there is the issue of finding people who understand the principles of MCS-safe renovation. There are only a handful of known experts in MCS-safe building around the country. Green builders are often open to hearing about MCS-safe renovation, but their priorities are slightly different from those of MCS-safe builders. For example, basic wiring can be a problem for people with MCS, who often suffer from electromagnetic sensitivities and need specialized wiring in their homes. Plumbers typically use toxic glues to seal their pipes that reeks for weeks or months on end, and aren't very willing to use alternative products. If a plumber simply does what he has been trained to do, or an electrician ignores specialized instructions, Feudale-Bowes could lose her safe structure, and the toxic damage might be impossible to remediate (plus, obviously, she can't stay in a hotel while some stinky contractor is stinking up her safe space). This is the basic reason why she probably had her husband install the pipes, or did it herself. She didn't want to get sicker or die.

Housing accommodations are made all of the time for people with other disabilities. There is absolutely no reason why a judge cannot see this for the exceptional case of housing discrimination that it is. "For the wife's medical problems, there is sympathy," states Judge Carol McGinley. "For the owner's defiance of the township's lawful directives, there is no excuse." The judge is adopting quite a tone of condemnation against Craig Bowes: surely this guy should be run out on a rail for putting up a metal shed. I'm sure no dude in Pennsylvania has ever erected a shed without a permit!

Meanwhile, I wonder what is happened to the local batterers in South Whitehall who are beating their disabled wives instead of helping them? Disabled women are at least twice as likely to be abused as non-disabled women, and their intimate relationships are often riddled with violence. Given that reality, and the social climate that cushions such violence against people with disabilities, perhaps Judge Carol could act neighborly and use her energy for a real cause, and crack down on the men in her community who use their hands for violence instead of salvation. Meanwhile, I hope the rest of us can do something to prevent this horror before another witch (i.e. extraordinary woman) drowns in a sea of social ignorance.

2008-08-31T20:59:00.000-07:00

Mayor Ray Nagin reports that the "storm of the century," Hurricane Gustav, is bearing down on New Orleans. Are we better prepared this time?

Time reports: "Stung by the images that flashed across the world, including the photo of an elderly woman dead in her wheelchair, her body covered with a blanket, officials promised to find a better way."

I remember that image too – the wheelchair, of course, is what got me. Not only the wheelchair, but also the appalling lack of recognition of disability issues in the wake of Hurricane Katrina. I heard reporters talking about race and class and sidestepping the disability issue. I remember another image of a man with no legs on a rooftop. The newscast cut from that image to one of a reporter saying quizzically, "Why didn't some people leave?" The reporter, of course, drew no connection between those crazy stragglers and, say, the lack of legs.

So what's the plan for Gustav? "This time, the city has taken steps to ensure no one has an excuse not to leave. The state has a $7 million contract to provide 700 buses to evacuate the elderly, the sick and anyone around the region without transportation," reports Time.

Okay, well that appeases me slightly. They're going to consider the disabled this time? Great – give 'em "no excuse not to leave." But then the plan gets more bizarre. The shut-ins are apparently supposed to find their way to secret "pickup points" and not expect to be scooped up from their homes and beds. Not only that, but they are supposed to intuit the location of the "pickup points." "In New Orleans, the locations of the evacuation buses were not made public because people who need a ride are supposed to go to designated pickup points, not to the staging area." That's right: flex those arm muscles, Mr. No Legs: it's time to drag yourself to a "pickup point." Would it be too much to ask if there will be an accessible van to take some of the less fortunate hobblers to the pickup point? Can those who are bedridden at least be given a gurney with wheels and a push in the right direction?

Apparently not.

Resident Elouise Williams, 68, reported that she called the city's special 311 hotline number until she was "blue in the face," trying to figure out what to do, then decided to stay in the Algiers neighborhood to check on inhabitants who might not be able to get out. "My thing is, my fright is, if we have somebody in these houses and they're not able to get out, they're going to perish," she said, "And we had enough of that in Katrina."

Why does Elouise seem to be the only person with any common sense?

Maybe it's because people are so blinded to the realities of age and disability that they can't do anything but engage in bizarre victim-blaming and projections of personality attributions when the issue of disability or age comes up. AOL News reported yesterday that more than half of those who died in Hurricane Katrina were 75 or older. This is an appalling statistic. The article speculates why this might have been the case: "The results present a tragic portrait of elderly residents who may have thought the warnings were a false alarm, who feared that abandoning their homes would lead to looting, or who simply didn't want to leave their familiar surroundings for the unknown."

Of all of the victims who died, 22 percent died in hospitals and 12 percent in nursing homes. So am I to believe that some woman hooked up to dialysis was having a phobia about looting and "the unknown?" And that some guy with a walker didn't get out because he didn't want to "leave his familiar surroundings?" Are we this far off from recognizing human frailty and the need for basic accommodation?

CNN's coverage focused on those who "just won't leave" during this mandatory evacuation period, like those wacky restaurateurs who just can't stop selling bucketfuls of seafood as the Hurricane bears down. Oh, and also this disabled guy:

"Across town in the 9th Ward, a neighborhood decimated by Katrina, Sidney William climbs slowly out of his truck. He's 49 but moves like he's 20 years older.

'My legs hurt; my feet hurt a lot,' he said. 'It's not easy.'

William wants desperately to leave his native New Orleans to avoid Gustav. He didn't leave for Katrina because he didn't have the money. He won't talk about what happened to him during that storm.

'I wish I had the money to go.' Rejected for disability subsidies, he depends on his 23-year-old daughter, Gloria, to support the family."

All of this feels a little too close to home for me, since I have spent much of my adult life fighting for disability accommodations and trying to get people to understand that there are some of us who can't go to "pickup points" or travel at will because of our disabilities.

Of course the Americans With Disabilities Act only fights for "reasonable" accommodations for the disabled, and that word "reasonable" is a tremendous loophole. When basic human rights are not recognized, and people in nursing homes are given absolutely no way to escape the horror bearing down on them, they'll almost always – by some implication – be called unreasonable. They'll be called phobic about looters, or terrified of the unknown, or unable to recognize an alarm they have memorized over decades of living on the Gulf coast.

I hope one day the media, the government, and the public decide that "reasonable" accommodation is accommodation that values human life enough to meet it on the doorstep.

2008-04-17T16:44:00.000-07:00

This image symbolizes me moving my blog from MySpace, which I just did (mostly)! My life also feels like this picture most of the time. Not because I'm able-bodied enough to hitch up an oxbow (or, in this case, yoga strap) and pull several tons of steel, and not because I'm actually doing the preposterous maneuvers in this picture, but because of ME/CFIDS and the fact that most of the time I feel like I'm lying beneath the steel.

2008-04-10T19:30:00.000-07:00

Largehearted Boy!

My Book Notes essay on Pathogenesis was just posted at the fabulous literature and music blog Largehearted Boy.
This blog is worth checking out for a lot of reasons -- free music downloads, musicians talking about books, writers talking about music -- but I think the Book Notes column is such a fantastic, original idea. From the blog: "In the Book Notes series, authors create and discuss a music playlist that is in some way relevant to their recently published books."

From Largehearted Boy:
"Pathogenesis is ideal poetry for me, powerfully personal and yet global in its implications. A call to arms, these poems follow Munson's battles against the medical community and her own body as she fights Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Multiple Chemical Sensitivities (MCS)." Read the whole Book Notes essay!

2008-01-31T19:25:00.000-08:00

Corkscrewed! Me and My Lyme!

Just when I thought there were no other ways to be pathogenically screwed, I have been corkscrewed.

I have spent most recent months in what Pamela Weintraub called, "the gullies of sleep so black that, except for the nightmares, I thought I might be dead," except for me most of this was waking sleep. It's hard to describe the vacuity of my days and nights, except to say this much illness is like losing time while being exceptionally present to it, not a bit dissociated from the torture.

On November 1, I received a diagnosis of Lyme disease in addition to my other ailments, and my latest Western Blot test was positive, indicating the spirochetes have taken hold. With Lyme compounding the already-debilitating brain dysfunction of CFIDS and MCS, my writing has become flat and pragmatic when it comes out at all. One doctor noted "Dead Creativity" as a common personality change of Lyme, but the cognitive problems go beyond that. As Amy Tan (The Joy Luck Club) wrote about her Lyme, "By day, my memory was held together with friable threads, my concentration was as easy to disperse as blown dust, and when I tried to read, I often found by the second page that I had no idea what the book was about. I did not possess any of the skills necessary to write fiction, for I was barely able to traverse the distance of sentence to sentence, let alone keep in mind a narrative that had to span four hundred pages and keep taut multiple intricacies of plot, characters, and thematic imagery."

I've had cognitive impairment for almost sixteen years, so I know what it is to write in the sand at high tide, but the additional assault on my intellect has been brutal.

Before that deer tick crawled up my flesh in June of 2007, things were looking up. I had an upswing from CFIDS and MCS in May. I was feeling slightly better than I had in a few years, except that I still had horrendous cardiac symptoms. I had a continuous sensation in my visceral heart that was almost beyond description. It felt if I were lying on a counter squeezed between the parts of a hand-crank steel citrus juicer, with a muscleperson crushing the two plates around my heart as it lie there like a deflating orange. Sitting up or trying to leave that metal vise – even for a minute – would intensity the feeling until the most crushing, suffocating sensation would surround my heart and stake it to my chest. The sensation was horrifying and continuous and had gone on for almost three years: my worst symptom of all of my years of CFIDS. During that time, I had to eat most of my meals lying over the side of a queen-sized organic mattress on the floor of my living room, so my head would be below my body. I was using an absurd computer setup that looks like an iron lung. My ex built the box that hangs from the loft above and houses a computer screen. My PCA built the heavy frame my single futon rests on beneath the screen. On a typical day, I would crawl between the box and the futon frame and put the keyboard on my lap. I spent most of my time in that uncomfortable place, lying flat with my legs elevated, because my screen doubled as a TV and is hooked to the satellite – and I lived as if I was trapped under a fallen tree. If I tried to be upright for even a few minutes, my cardiac symptoms would get so bad it would feel like the oxygen was being squished out of every corner of my body by a large steam press, and that my heart would be imminently crushed beneath the weight.

But by May my heart was finally – after three years – not continually giving me that crushing, suffocating sensation that I have only read about in old homeopathy literature describing some types of pericarditis and one cardiology textbook from 1854 that stated matter-of-factly that most patients with my group of symptoms die. My upturn was due to a new medication from pig livers (Nexavir), found by Dr. Paul Cheney to help patients like me who have low cardiac output. My standing cardiac output a few years ago was, from the case studies I could find on similar testing, roughly equivalent to that of a 79-year old with Class IV heart failure. My doctor did not seem particularly concerned about this, or by the fact that I was suffering a kind of psychological Crush Syndrome under that tree of my gravely restricted life.

After a few months on pig potion, I was also able to stray outside of the confines of my iron lung desk. I could walk to the garden twenty feet from my porch and watch the seeds sprout. I could sometimes take short drives in my car – not far enough to go to a medical facility but I got to see chickens pecking in yards and goats nuzzling against fences. I wish I could say these things were paradise but I was terrified my symptoms would come back even worse (which often happens with CFIDS). Around the same time, I had gotten back to my mindfulness meditation practice (inverted with my legs against the wall), and it was actually making me have some visionary instincts about my body.

In June, for example, I had a sudden urge to buy a lot of tinctures and purchased herbs I knew little about because I was instinctively drawn to their names, such as Spilanthes and Usnea. A surge of early summer heat drove me outdoors. Recently, I was reading how microbes change one's posture and personality to propagate themselves, or make infected parties susceptible to other microbes. Apparently this worked on me, because once outside I had to lie down, where bugs could more easily have their way with me. I was flat on a blanket in the grass, the breeze tickling up my legs that were elevated on a slight incline leading to some overgrown plantings. A week later, I awoke with a tremendous toothache. It felt like someone was driving a poison-tipped spear through my face. Just as suddenly, my neck hurt, I could not walk straight, and I found myself lilting sideways like I was having a stroke. My cognitive problems were worse than ever and I felt so tired – not CFIDS-fatigued but an odd, poppy field vacant tired. I decided to take an old bottle of Amoxicillin because I thought it would help the toothache. A few days later, I found a tick bite on the back of my skull.

My box of Spilanthes, Artemisia Annua, Usnea, and other tinctures arrived in the mail around that time and I began experimenting with them. I hadn't known when I ordered the herbs that Spilanthes and Usnea are part of a well-known herbal Lyme protocol used by a Dr. Zhang, and that Artemisia Annua is often used against babesia, a common tick-borne co-infection that can occur with Lyme. Having these herbs on hand when I found the tick bite was prescient.

But the bump on my skull gave me an eerie feeling. I had looked into Lyme before. It was on my radar since my partner at the time I got CFIDS had previously had Lyme and she was beginning to experience post-Lyme arthritis when we met – a very painful reality for her since she was a classical pianist. Some activists at one point had sent me speculation about borrelia burgdorfi transmission through body fluids. I didn't probe too deeply, partly out of a protective instinct that I didn't want to burden my ex-partner, who is still my best friend, with the idea that she might have infected me. I did get tested a couple of times, but most Lyme tests are notorious for producing false negatives, and Lyme is a clinical diagnosis based on symptoms as well as test results, so I never got a clear answer with those two negative tests.

The events in May and June in fact happened exactly fifteen years after my flu-like onset of CFIDS, which had started before commencement at Oberlin College and continued on through a terrifying move San Francisco, and had the same eerie feeling of foreshadowing that made them seem like I was watching the events unfold from the other side of a trick mirror. I felt like I was getting another chance during a traumatic revisit of the charred crime scene where I had been suddenly stripped and pathogenically violated. Dr. Cheney believes in moments of gene reshuffling many years into CFIDS, when the genetic hand one has been dealt, in some physiological gamble, can suddenly hit pay dirt. I was galvanized despite my inability to do anything but sleepwalk through the days.

Because of my toothache, my doctor insisted Lyme was unlikely and the balance problems and neck pain were due to a tooth abscess (I later learned that Lyme can cause tooth pain that shoots up the trigeminal nerve). He felt that an abscess could also explain the chills I was starting to get at night. My severe heart symptoms were much worse again too, and I rarely had an hour when death didn't feel acutely present. He increased my dose of Amoxicillin after a temporary experiment with Doxycycline that made my toothache and heart symptoms worsen. He reluctantly agreed to Lyme testing through Igenex lab.

If you're wondering why I did not run out and get a second opinion or go to a hospital, it's because I have severe multiple chemical sensitivities (MCS) and I was conducted the aforementioned business with my doctor over the phone. Having MCS pushes me back into 19th century medicine due to a complete lack of chemical-free and fragrance-free medical services in this country. The doctor I'm speaking of is the only doctor I can find to do home visits. It took another month before I convinced an old hippie dentist recommended by an MCS friend to come to my house and check out my tooth on the porch.

A few weeks after I found the tick bite, I found a reddish plaque on my lower back but it wasn't a classic bullseye rash. Apparently, only about nine percent of the Lyme rashes now have the bullseye (or erythema migrans) shape. I was starting to get pain in my joints, heels, and the soles of my feet. My doctor had gotten the test results and told me in a crisp voice on the phone that I didn't have Lyme and could stop worrying about it. I asked him for copies of the tests but, when I got them, was so spaced out I put the unopened envelope in another room and forget it was there. My doctor kept prescribing antibiotics for the tooth pain and for my cardiac symptoms, and I cared about very little at that point but staying alive. In August, the dentist showed up with a big beaded earring dangling from one ear but did not find any signs of a tooth abscess. I was too exhausted and cognitively impaired to even think about digging out the test results myself until around September. That's when I saw my Immunoflourescence Assay (IFA) for Lyme was positive, and that my Western Blot test had enough positive bands that most LLMDs would render a positive diagnosis (July was too soon after the tick bite to expect a positive WB, but a positive IFA is considered highly accurate). My doctor had overlooked the obvious diagnosis of Lyme disease, even after I pointed at it with a huge neon arrow. My later Western Blot, as I mentioned, was also positive.

By the second week of September, I was indescribably ill. My chills had turned to gripping shakes, my cardiac symptoms were off-the-charts bad, and I was so convinced I was going to die I used a simple template for a will I found online to scratch out my intentions for my literary estate. I begged my doctor to give me something stronger, even though he still did not believe I had Lyme, and he prescribed the post-9/11 superstar antibiotic Cipro. Cipro pulled me back from the white-knuckled edge. Within a few weeks, miraculously, Cipro loosened the iron grip on my heart, and I was able to sit up or prop myself up on pillows for periods of time – for the first consistent stretch in over three years. Cipro also gave me the energy to look over my tests, and I saw the unmistakably positive IFA and positive Lyme-specific bands on the WB. After much searching around, I found a Lyme literate doctor (LLMD) willing to consult with me. This new doctor quickly diagnosed me with Lyme disease based on my symptoms and test results, and told me she was fairly sure I also had babesia and bartonella, two common coinfections.

Getting a positive test for babesia and bartonella (which the Lyme community calls "Babs" and "Bart" as if talking about a Fifties homecoming couple) is very complicated, as there are many varieties of each that don't even have lab tests. There are approximately ten American human varieties of bartonella and thirteen of babesia but the tests only cover a few of these. Because bartonella is notorious for causing (frequently lethal if left untreated) cardiac infections in the immune-compromised, and is the only organism of the three that responds well to Cipro, my LLMD concluded bartonella was the most likely culprit in my heart, especially given my other bartonella-specific symptoms such as pain on the soles of my feet. I had probably been infected with it when my cardiac symptoms started, and the Lyme this past summer was most likely a reinfection. Even Dr. Skeptical admitted that the Cipro was treating an infection that seemed to be affecting my heart. If I hadn't found my way to antibiotics that helped my heart, I don't know where I'd be now, if I'd even be alive. From the deepest wisdom of my body I can soberly say: I doubt I would be writing this. Both Lyme and bartonella carditis can be fatal.

Repeated infections with Lyme and its coinfections are not uncommon, and one might acquire different strains of Lyme or new coinfections with subsequent tick bites. One recent study found a recurrence rate of 3-28 percent of Lyme in endemic areas, and found substantial evidence that most of these recurrences were due to reinfections with new ticks. There are probably genetic susceptibilities as well. Bernese Mountain Dogs, for example, are freakishly susceptible to Lyme when compared against similar breeds.

The coinfection conundrum surely does add fuel to the reality that more CFIDS cases than expected may actually be chronic Lyme coupled with other infections. There has always been quite a bit of jumping back and forth between the CFIDS and chronic Lyme communities, and until recently I believed Lyme was just another of a slew of infections that CFIDS patients often tested positive for, along with HHV-6, CMV, various mycoplasmas, chlamydia pneumonia, and others. Some CFIDS patients I knew came back positive for Lyme years into their CFIDS diagnoses and began identifying as Lymies, relinquishing their former identities as PWCs. I felt vaguely betrayed by them. Lyme patients, as bad as they had it, seemed to possess the privilege of those with known causal pathogens – something CFIDS patients didn't have. I knew a little bit about Lyme politics – and had ordered Michael Christopher Carroll's book, Lab 257: The Disturbing Story of the Government's Secret Plum Island Germ Laboratory, about the infamous Plum Island germ lab on Long Island that is said by many to have disseminated Lyme. I already had a peripheral fascination with the government's interest in chronic-illness-inducing zoonotic pathogens as biowarfare agents, and my aforementioned ex-partner had gotten ill with Lyme on Long Island so her proximity to Plum Island intrigued me. With further reading, I now know the history of Lyme eerily parallels the kind of stuff in CFIDS exposes like Osler's Web and The Extremely Unfortunate Skull Valley Incident: government cover-ups, corruption, beloved doctors under threat, and the flat-out denial of the existence of the sickest patients. The difference between CFIDS and Lyme is a stirring sense of hope in the Lyme community, because there are known pathogens and known treatments – if one is lucky enough to get properly treated. But there is also righteous anger and plenty of suffering.

Ultimately, patients with chronic Lyme, just like patients with CFIDS, are in hell, fighting for their survival and livelihood. Lyme is still treated by most doctors as limited and easy-to-eradicate. Patients who progress to chronic Lyme are largely ignored, or their existence officially denied. As Dr. Daniel J. Cameron wrote in a letter to The New England Journal of Medicine this month, there is a decided publishing bias toward researchers and clinicians who don't believe in chronic Lyme or long-term antibiotic treatment. "It is time the medical community acknowledged Lyme disease as another example of 'clinical equipoise' – an absence of consensus within the clinical community – and established publishing standards accordingly," wrote Cameron. Meanwhile, Lymenet is full of horror stories about mothers passing Lyme on to their babies, with pictures of adorable children taking antibiotics with sippy cups. Lymenet is quite educational about this elusive beast only pioneering doctors really recognize. The threads have ominous titles like, "Just woke up from coma," "Lyme obituaries," and "PICC line infected again."

Personally, my greatest education has been around the issue of coinfections. A large percentage of chronic Lyme patients are infected with babesia, ehrlichia, or bartonella. A tick can be infected with numerous pathogens, including rarer ones such as tularemia, rocky mountain spotted fever, and relapsing fever, and transmit them all in a single bite – significantly increasing the likelihood of a protracted and severely debilitating illness. Since the treatments for coinfections may involve stronger antibiotics, antimalarials, or other altered protocols, the coinfected patients often receive ineffective treatment and relapse into new waves of mysterious symptoms. As Dr. James Schaller, M.D. prophesized, "The year 2007 will mark the death of the expression 'co-infection,' because increasingly patients have awareness that Babesia and Bartonella are not little addendums to Lyme disease, but are often far more serious than Lyme disease. Any physician who is not well-versed in these two killing infections will not be competent enough to treat patients with flea and tick infections. These infections do not circle around planet 'Lyme' like small moons, instead, they are their own huge planets that cause massive consequences to the human body."

Tick borne illnesses are increasing dramatically as the medical establishment lays on the grass with inaction and the bugs continue to breed. The CDC reported a 40 percent increase in reported Lyme cases from 2001 to 2002, for example. That's a massive leap. In Massachusetts, as evident as the epidemic seems to be, most doctors seem fairly ignorant about proper testing, and Lyme literate doctors are very hard to find. Someone I know with CFIDS and MCS contracted Lyme last summer, as did a sick friend last Spring, and another MCS friend the summer before (and her dog). I know of a young man who was given a serious psychiatric diagnosis after sudden onset symptoms, yet his doctors did not think to test for neurologic Lyme, which can cause transient schizophrenia and other psychiatric phenomena once it invades the brain. It's horrifying to think how many people are ignored, iced out, or even institutionalized because the pinhead-sized tick in the haystack is just too small to be a suspect.

Meanwhile, as I lay finally-not-dying (I hope), I'm undergoing not just migrating cognitive problems, but a paradigm shift. I'm struck by the fact that, even after having CFIDS for so many years, I can experience new varieties of fatigue, pain, cognitive problems, and other familiar symptoms I thought I knew so intimately. It just goes to show how broad the physical landscape is, and how narrow it's lexemes. I hesitate to use the word "fatigue" anyway, since I'm really talking about a level of neurological, intracellular, and deep-tissue pummeling that most people never experience. People with CFIDS have long referred to fatigue as "the F word" because of how it has been misused against us. But if the other F word can mean so many individual things, why do we insist on narrowing all physical experience to such a limited questionnaire of medical "complaints" that rarely lead to the gestalt of an experience?

As I type this, the battles known affectionately as the "Lyme Wars" rage on. The warring camps are the Infectious Disease Society of America (IDSA), which maintains an establishment viewpoint that Lyme is a discrete illness easily treated by a short course of antibiotics, and the International Lyme and Associated Diseases Society (ILADS) which holds that Lyme is a complicated illness with unreliable testing and the need for long-term aggressive treatment strategies. Many patients are perplexed why our government agencies stick to the IDSA agenda, and they speculate that insurance companies fear the cost of long-term antibiotic treatment. But it's actually more than neglect, since physicians who treat chronic Lyme patients with long-term antibiotics are not simply ignored, but censured. The most recent case of this is Dr. Charles Jones, a beloved Lyme pediatrician in Connecticut who is being dragged into court by the Connecticut Department of Public Health on charges that he treated patients deemed "low-risk" for Lyme disease (some with a history of known tick bites) with antibiotics. This would make sense if the man was a crook, but his patients love him so much they are raising funds for his medical defense, showing up in court to support him, calling him a saint, and sending him fruit baskets. This battle is not just about insurance companies restricting long-term antibiotic use. If Jones were a dermatologist prescribing tetracycline to acne-ridden teenagers, I don't think any of this would be happening.

On the flip side, the visibility of children with chronic Lyme, or the deaths of teenagers with Lyme, would be terrible PR for the IDSA.

Many people find it hard to believe the government might intentionally squelch the facts of an epidemic, but this idea is old hat to CFIDS patients. We witnessed the foot shuffling and misappropriation of research funding and outright mockery around our illness for decades. Still, it's hard not to turn to the powers-that-be for help when so many are suffering. I find it fascinating and ironic that a patient written up in Southern Medical Journal whose Lyme had crossed the blood-brain barrier and who began, as a result, to hear incessant musical hallucinations, heard only patriotic music – when so many official agencies deny the life-altering severity of neurologic Lyme. But without borders we are too permeable, no longer immune: this goes for national borders as well as the brain's borders.

I have an unusual perspective now, traversing the politics of three maligned illnesses so that I can see the patterns of disbelief and neglect, as if I'm watching them from an air ambulance. Because of this, I don't foster many illusions that either medicine or government is necessarily out to protect me. Our country, after all, has a deep history of medical experimentation on non-consenting subjects. It wasn't that long ago that spirochetes were studied non-consensually on poor black men in Alabama, in the form of the Tuskegee Syphilis Experiment. Many have written about the military industrial complex's ongoing fascination with incapacitating illnesses, with more investigative thoroughness than I can't muster up right now. In World War II, for example, brucellosis was studied by the military because of its known ability to cause chronic disability. The authors of The Extremely Unfortunate Skull Valley Incident support an argument that military brucellosis research could have been linked to the emergence of CFIDS (and brucellosis can also be spread by ticks). The borrelia genus of bacteria, which encompasses Lyme disease, was studied by Unit 731, a notoriously sadistic Japanese biowarfare experiment station in WWII. Soon after that, the Plum Island Germ Laboratory was founded as a lab to study zoonotic diseases that could be used as biological weapons against the food supply. It was criticized for poor safeguards and controls, and accused of releasing some of these zoonoses to the human populations along the eastern seaboard, particularly Lyme disease. Lab 257 contains an alarming map that shows bird migration patterns from the lab to the primary epicenters of Lyme in the Northeast. Carroll writes, "You can pinpoint cases of Lyme disease on a map of the United States by drawing a circle around the area of largest infection. Now you can tighten that circle until a single point is reached. That point? Plum Island. Spokes radiate outward from this point and pass through neighborhoods boasting the highest rates of Lyme disease contamination in the nation."

Tick-borne co-infections have been biowarfare favorites too. Take Q Fever, or coxiella burnettii, a pathogen once tested on Seventh Day Adventists by the government, as well as at the infamous Ft. Detrick testing facilities in a project known as Operation Whitecoat, which also tested tularemia. This is declassified information, so the U.S. Government had an admitted interest in Q Fever as a biowarfare agent, and even somewhat carelessly played with it – although Q Fever (Query Fever) is one of the most infectious diseases in existence, and has been researched in Australia and Croatia and Japan and the UK for its ability to produce a long-term illness that meets the diagnostic criteria for CFIDS. One can get Q Fever from a single bacterium, and coxiella burnetii can live for long periods of time in dung or wool and be spread by wind, giving it the type of potential America's forefathers saw in smallpox and blankets.

Our nation's medical atrocities resemble the maneuvers of a batterer who is both charming and malevolent, following the classic three-stage batterer Cycle of Violence. In the "tension building stage" there are cold wars and stockpiles of biological weapons. In the "explosion stage," the Atomic Energy Commission tests radiation on non-consenting human subjects. In its "honeymoon stage," someone issues an apology for the horrors of the past, puts together a website or hands out antibiotics, and promises it will never happen again. Then, as the snarling lip of tension building begins to overshadow the fragile honeymoon, the brain continues to pledge allegiance. And allegiance, in its own way, is pathogenic. I think it is naïve to assume the cycle won't continue, that it isn't continuing right now.

Of course allegiance to truth is another story, and we all owe ourselves that, along with an ounce of prevention against these illnesses that are so easy to deny. I hope as I lay down these words from my snow-globe-shaken-brain, I can at least offer a little of that.

Author's Note:
This is not intended as medical advice and I am not a physician. Also, my brain is pretty wrecked, so though I've fact-checked as carefully as possible, I certainly would love to hear feedback about any misprinted or contested facts.

A concise explanation of the Lyme-biowarfare history can be read here and here.

There is a great deal of controversy about the way Lyme is diagnosed. For more on this, please visit and download the guidelines from the ILADS here and read Dr. Charles Crist's opinion on how to interpret the Western Blot here.

Please do not reprint or reproduce any of this without permission.

2007-10-10T19:23:00.000-07:00

A Normal Reunion

I had on a peach rayon dress under the black robe and I was about to address the class of 1987. It was my idea for the three valedictorians to talk about the past, present, and future. Rob, whose best friend had died several years before of a rare disease, covered the past. He and I emailed years later about his lymphoma and my CFIDS (we both got sick in our twenties) but first my friend Kim was talking about the present. There were over 400 kids in cap and gown and at least a thousand people in the bleachers and I was terrified to stand in front of them and talk about the future. I had such severe stage fright, in fact, that I had been liberally using over-the-counter sleeping pills in the months before. My hair was big and lacquered that night.

My sister once talked about how she never saw adulthood as some great thing. We both felt a sense of dread about it. I was uneasy that night, as if I knew the cliff in front of me – knew it like a Wile E. Coyote who has scouted ahead to discover the angry anvil's possibilities.

I hadn't spent much time outside of Illinois, but was tired of the etherizing hum of crickets and cicadas and the flatness that was an unending taunt. The soil was rich in McLean County, and there was a palpable sense in Normal, Illinois that roots were still possible. Most of my high school memories involved driving, usually in grid patterns as if we were the worker insects, knitting something larger and never getting to enjoy its warmth.

People have been emailing me about my 20-year high school reunion but I can't go. As swiftly as I ran away from home to a radical hippie school in Ohio, fooled around with boys and girls, rode my Trek touring bike to peach stands, spent a month on a commune weaving hammocks, skinny dipped in a murky pond, and burned my eyes on poetry by geniuses, I got sick. Axioms aside, I couldn't go home again: I became too debilitated to make the trip back to Illinois.

Shannon wrote me last week. She was a brainy, pretty blond girl who seemed unstoppable. She spent a magical, life-changing year in Japan back then and told me everyone wanted to touch her hair. Now she travels to Africa for her work. As the only other out queer person from my class that I know of, she was conflicted when she read her yearbook inscriptions: "I came away with this odd sense of wondering, who the heck was I anyway? I only vaguely recognize myself in the words that others wrote to me."

My classmates must have known I was a psychological expatriate, because they wrote lines like: "Let me know what kind of wild, consciousness-expanding experiences you run into. Just don't go off and disappear into some Indian cult." And: "With our luck you'll be the first lady Pres. Good Lord what a country we'd have then." And: "You are deep, sensitive, warm, and alive. I will miss you. What an impact."

Reconnecting with Shannon was amazing. I didn't know any queer femmes in high school and didn't know I was one. My life has often felt like a magician's box, my body cut into three identities. I have my early, earthy embodiment, my college coming-out queer self, and the self who got sick at age 23 and rapidly became disabled. "It's important for us to have congruency," said my college friend on the phone yesterday. But she lives in the neighborhood where she grew up – a hip, culturally-enlivened place. It's different for those of us who are puzzled by split selves.

For me, these feelings are compounded by literal exile. Not only am I too ill to travel, but Illinois is too poisoned by chemicals to be a life-sustaining atmosphere for someone with severe chemical sensitivities. Last year in Massachusetts, the state decided to spray aerial pesticides over 120 miles away from my house, and the drift apparently caused my blood to turn black with a condition known as methemoglobinemia, a chemically-induced state where the blood can barely transport oxygen to the tissues. People with MCS can get a lot sicker – even die – from pesticide exposures. Dr. William Rea, who founded the Environmental Health Center of Dallas, told me that black blood from distant pesticides was something he had witnessed numerous times in people with MCS. The chemical industry – just like the cigarette corporations in past decades – maintains its own "research" institutions, legal teams, and PR spinners to make sure such stories of chemical canaries don't leak out. The chemically sensitive are, with Geiger bodies, too much of a scary harbinger of the future.

The future: I had no idea what it would be when I prattled on with my chemical-laden perm about the next phase in our lives. Now I am the future: symbolic, catastrophic, and drifted far from home.

In Illinois, it is impossible to get any distance from agricultural chemicals. Most members of my high school had a familial connection to farming or belonged to the Future Farmers of America. Willie Nelson's Farm Aid played its first concert just an hour from my hometown in 1985. In my high school years, the breadbasket was bought out by Agribusiness. Farm Aid has raised 30 million dollars to date to promote a family-farm based system of agriculture. But such homegrown efforts are up against monstrous forces.

It's hard to describe what a spiritual waste this is for those of us who grew up in Illinois. To most people, the landscape seems unremarkable, but it's the very spaciousness, the vacuity, that gives it a monastic holiness. As Thomas Simpson writes: "'Vacant' land, 'pragmatic' land, 'unmitigated' land, but land with a steep melancholy to it; these are truths of Illinois landscape, but not the kind you'll hear from a tourist office. Our writers describe how landscape shapes our character in ways we never notice. 'Rural Mid- westerners live marooned in a space whose emptiness starts to become both physical and spiritual,' argues David Foster Wallace in an essay about growing up in rural Champaign."

Indeed, as I addressed the Class of 1987 about the future, I felt my physical vulnerability as a visceral shiver. "In a land where you can see from horizon to horizon," Simpson continues, "where an apple core tossed on the ground can shortly sprout an apple tree and then an orchard, where we can justifiably describe certain January skies as 'literally leaden,' here in Tornado Alley we residents of Illinois may be inclined to a peculiar awareness of ourselves in relation to timeless and uncontrollable forces." In art class my senior year, one of the most beefy football players in school had sat next to me and painted nothing but fragile-looking watercolor barns. Even the most solid of us knew how easily we could topple.

I don't know why I got sick at age 23, but certainly the forecast for my chemical body burden was damning.

Ten years after I graduated from high school, Sandra Steingraber published her eco-expose, Living Downstream. Steingraber was diagnosed with cancer in her early 20's while she was a student at Illinois Wesleyan University in Bloomington, IL – Normal's twin city. She later gathered extensive data on pesticides in Illinois, and the statistics are mind-boggling. Eighty-nine percent of the land mass is agriculture, and ninety-nine percent of that agriculture uses pesticides. Only one out of ten steps in Illinois lands on uncontaminated ground. "A lot goes on in the 11 percent of Illinois that is not farmland," writes Steingraber. "Approximately fifteen hundred hazardous waste sites are in need of remediation – a list that does not include several thousand pits, ponds, and lagoons containing liquid industrial waste. And each year Illinois injects some 250 million gallons of industrial waste – which, until recently, included pesticides – through five deep wells that penetrate into bedrock caverns."

Organic Style Magazine later compiled data to rank the toxicity of 125 American cities. The two most toxic cities on the list – worse than New York or Los Angeles – were Chicago and St. Louis. If you draw a line between those two cities on a map, spanning a five-hour drive, you'll find my hometown smack in the middle. For me to move to Illinois, even if I could, would be like a kid with a peanut allergy moving into the Jif peanut butter factory.

Still, I can't convey the haunting, preternatural beauty of the sprawling fields. When I think about the environmental destruction of the Midwest I feel a deep regionalism, and anger at the corporate colonization of what used to be a vibrant landscape of tallgrass prairie. I have lived in states that pride themselves on environmental policy, and I have heard residents make derisive comments about the environmentally "backward" parts of the country – typically, in their eyes, the Midwest and the South. They rarely examine the economic forces behind environmental degradation or see their eco-purity as a facet of economic privilege.

Another person from high school I reconnected with was Teague, who experienced his own minor exile from our home state due to illness. His family moved him to Arizona before the end of high school because of his asthma, and the move in his case led to substantial health gains. Like me, Teague couldn't wipe the prairie out of his mind, and featured it in his aptly-titled first novel, The Pull of the Earth, which the Denver Post described glowingly as "a deceptively rich tale of contrast and continuity" set in Illinois. My forthcoming book of poetry, Pathogenesis, likewise features the Illinois landscape, often depicted in prairie plants largely decimated by agricultural intrusion. "I am sure the panic grass has a language of gestures," one poem begins. "I am sure the wild horses of forced surrenders/have run and bled in the knives of green."

If I could, I would travel back to Central Illinois because I believe there is timelessness there, maybe a local antidote. David Foster Wallace compares dusk in Illinois to a fugue state, where the landscape becomes "hypnotic, a mental state at once flat and lush, numbing and yet exquisitely felt." This hypnagogic experience is surely more than a kindled limbic system poisoned by Atrazine, but something as profound as I remember. I didn't know 20 years after giving a valedictory address about the future that I would be living with a futuristic illness, but I don't regret that Illinois soaked into my skin, or that I wandered in a near-psychogenic fugue of bodily degeneration before landing in the woods of Western Massachusetts. The Prairie is known for its ecology of rapid change. When Illinois was covered in tallgrass prairie, the landscape would alight in fierce, roaming fires called "The Red Buffalo" by local tribes. This was an essential part of the prairie ecosystem: the prairie had to burn to the roots to re-grow and thrive.

So here I am, Class of 1987, burning down to the roots to regrow. I hope to see you all in 2027.

My 20-year high school class reunion takes place on October 20, 2007

2007-07-04T19:22:00.000-07:00

Erotica Revealed Review of Origami Striptease
"This book reads like poetry and left me stunned with writer's envy."
(This review is kind of a plot spoiler but interesting! Be warned)

Queer life News: "Are You Queer Enough?"
"On April 12, 2007, eight Lambda Literary Award finalists were scheduled to read at the San Francisco Public Library. Only seven shared their work. Finalist Peggy Munson, in the Lesbian Debut Fiction category, was excluded from this event – without warning, without just reason, without apology.Why would one author be prevented from reading her work at this queer event? Bottom line: the organizers of the event policed her sexuality."

Rainbow Network Review of Origami Striptease
"To say the language is rich and luscious is an understatement. The author creates a fantastical landscape for her characters, with a carnivalesque sense of magic realism that is full to bursting with imagination."

2007-05-05T19:21:00.000-07:00

"Munson deftly experiments with gender, linguistics, and style."
-- Heather Cassell, Bay Area Reporter

It has been a big media week in the aftermath of the the Lambda Lit. Awards censorship scandal around my book. Oh, the drama!

~ o ~

Heather Cassell of the Bay Area Reporter covered the story in this week's issue. Read about it here:

"Members of the LGBT literary community were in a fluster after they learned that disabled queer author Peggy Munson was omitted from a Lambda Literary Foundation finalist reading program. . . "

~ o ~

Then, the fabulous Rachel Kramer Bussel interviewed me for the fabulous site, Feministing! Read the interview here.

Feministing! Logo

"Munson explains via email just what 'iambic meter' is, the connection between identity and language, why she's been 'buoyed' by the queer writing community in the wake of having a video of her reading from her novel censored from a Lambda Literary Award finalist reading (Origami is up for Best Lesbian Debut Fiction), and pushing the edges of the queer literary canon 'to its breaking point. . . .'"

~ o ~

Finally, Heather Cassell of the Bay Area Reporter reviewed Origami Striptease. Click here to read full article.

"Erotic writer Peggy Munson takes readers into a queer femme's surreal world of disability, illness, lust and love fucking boys with 'detachable penises' in her novel Origami Striptease, a Lambda Literary Foundation finalist for lesbian debut fiction. The violently poetic novel explores the complexities of desire, disability, gender, lust and love from a disabled queer femme's narrative. The narrator's voice is strong through the waves of illness that embody the lyrics of her iambic prose. Munson forces the reader into the narrator's world, stifled in the limitations of her body, illness, and desire for boys: butches, trannyboys, and daddies who force her to succumb to erotic passions. The passions flow in sordid detail."

2007-04-14T19:19:00.000-07:00

Lambda Throws an S-Bomb!

Just as my fellow Sagittarius Jim Morrison was finally excused for waving his schlong in public years ago, I have gone the inevitable way of fire signs (Britney Spears, Bill Clinton) and been called out for indecent exposure. Well, kind of.

So last night, I was scheduled to read via DVD with a group of other finalists for the Lambda Literary Awards (the big queer lit. awards). Since I'm too disabled to travel to readings, I put together a series of video readings from my novel, Origami Striptease, and have given readings by DVD. Last night's event was at the San Francisco Public Library

My publisher, Greg, was the first to report on the scandal. "You were censored by Lambda Literary Foundation!" his header said. Greg and his partner/co-publisher Ian had been at the reading, proud literary parents, eagerly waiting my video. A string of writers – including a transman with a female partner and the straight spouse from an anthology – presented work, but mine was conspicuously absent. No mention was made of the video, even though my name had been included in the press and the DVD player was sitting out. The reading ended abruptly with no explanation. Greg sniffed around for an answer and became tangled in a meandering series of excuses from the library organizer and Lambda representative that finally culminated in a bizarre rationale. My reading was apparently censored because it had been deemed "straight."

The Lambda Literary Foundation threw me the S-bomb! It's pretty weird from a canonical perspective. Was Gertrude Stein straight when she wrote, "As a wife has a cow, a love story"? Were the great female lyricists of the Blues straight when they crooned about bulldaggers in the Harlem Renaissance? Was Dorothy Allison straight for putting straight characters in Bastard Out of Carolina?

What troubles me is not just the gender-phobia in the conclusion that my work – which is so genderfucked – is "straight," but the ableism of silencing someone too disabled to represent her own work. When asked about making a unilateral decision to censor my work, the Lambda representative simply said, "Peggy wasn't there," and also briefly argued that my work was too sexual. Greg pointed out that two readers had straight affiliations and that another read a piece with intense sexual content. He also pointed out that the organizers had ample time to call him (or me) after the DVD arrived to address their concerns.

Since it appears the straight and sexy arguments were partly diversionary, I want to talk a moment about my lack of there-ness. I have to delve into the organizer's tautological reasoning for a second. S/he (Take that! Pronoun-obscuring!) decided to make my video invisible because I wasn't "there": I wasn't "there" because s/he made a decision to make my video invisible. For me, this really underscores the perpetuity of invisible realities. Those pushed to the margins are pushed further to the margins by nudges of exclusion, and absence makes the heart grow more distorted. To quote the homophobe-turned-Elton-John-fan Eminem, "I am whatever you say I am. If I wasn't, why would you say I am?" It really is a tree-falls-in-the-forest koan, isn't it? It's not that hard to call an absent person whatever you want.

If I had been able to present my work live, I can't imagine someone stopping me in mid-sentence, or asking to see the material beforehand to make sure it was appropriate (after all, they had selected my book as a finalist). One weird cultural assumption about the disabled is that they/we are okay with having privacy stripped away and decisions made without input. In institutionalized settings, for example, this may take the form of people assuming that disabled residents should not have a private space in which to have sex. All of the other Lambda finalists had the right to privacy and creative control. I didn't, because I wasn't "there."

The decision to exclude my work is characteristic of what goes on -- on a macro level -- in systemic oppression of the disabled. People speak for us, make misinformed assumptions about our intentions, shut us out, strip us of our agency, and make excuses for lack of inclusion. The same "he wasn't there" logic was used on a paraplegic man, for example, who refused to drag himself up the steps of an inaccessible courthouse with no elevators where he was supposed to appear in traffic court, and was arrested for "failing to appear in court." It's hard to explain the cumulative effects of such events, except to say that they quilt together into a systemic whole. Stealing someone's agency by making a decision without consulting her is a powerful, demeaning gesture. Not offering another means of accommodation, such as phone access, is an expression of privilege (of those who are "there"). It's a typical way people with disabilities -- due to being invisible and absent -- are rendered more invisible and absent.

It may not seem like a big deal, and in some ways it isn't – not this one thing. This moment is simply a useful springboard to talk about the repetitiveness of such events (and the Lambda Literary Foundation, for the record, sent me an apology). Oppression is a summation of phrases and gestures over a lifetime. Random exclusionary gestures mirror a collective consciousness of systemic oppression and violence, and this is what all marginalized people feel so palpably. This is what I'm talking about. And it is, of course, an ideology any queer organization should be actively fighting against in all of its forms.

Systemic oppression applies to transpeople and genderqueer folk as well, of course, and it's disheartening that my book was assumed to be "straight" because of pronoun scrambling. It's so powerful in Boys Don't Cry when the murderers, feeling duped, want to "know" for sure what's in Brandon Teena's pants. Isn't it interesting how often the question is about what's "there," what isn't "there," and what assumptions are made around that? These are not small questions: they are questions that nullify people, or get people killed.

So knee-jerk reactions to gender pronouns are no small event when transpeople are heckled, battered, abused, and murdered for daring to ride the subway or go into a bathroom. I interact with so many people with socially-queer bodies: some are straight people with disabilities whose bodies are treated as queer. Some are butches who have put off pap smears for ten years. Some, transitioning or not, prefer to use "he" after being called "she" or vice-versa. Some are queer femmes who like to suck strap-on dicks. Some want to fuck pronouns altogether.

One thing I love about my publisher, Suspect Thoughts, is that their author questionnaire asks authors to talk about all the myriad aspects of their queerness. In the world of publishing, it is rare to be embraced for all of ones literary and personal idiosyncrasies. In the larger sphere of literature, I don't think it's a good idea to let any rigid notions about identity go unnoticed, because it's a threat to so many writers doing innovative (even revolutionary) work.

Ironically, the DVD reading that was censored was from a section of the book called "What Made Jack Run" that contains short pieces examining "Boys" and "Girls" and is intended to explore the inherent violence in restricting and naming gender in strict binary terms. It's partly a deconstruction of gender insignia and stereotyping told through a surreal, dreamy, magical realist universe where dolls are ripped, apart, girls jumping from cakes are smeared in their frosting, and a genderqueer boy (whose gender identity is not specifically named in the book) dissolves into paper. One of the censored sections begins: "My hands on Jack were like a potter's hands on clay. My hands were firing bricks then lining wells so I could drink before I parched. I grabbed him by the balls that could detach. I grabbed him by the neck that I could shepherd with my crook." Wait a second: balls that could detach? Is that queer or straight?

Call me a utopian-child-raised-on-Free-To-Be-You-And-Me, but I really believe it's time to build ramps of all kinds and embrace difference. This is a pretty gay thing to say, right? Or is it just so gay it's straight?

And what's this about being too sexual?

Sure, the physical landscape over here is as muddy as the dirt road leading to my house. Before I read the e-mail from Greg, I listened to a message from my straight girl friend about her ex-boyfriend's dick. I checked to make sure my erotica story about a lesbian Amish teenager had gotten into the mail in time for an anthology submission. I read a raunchy e-mail from a straight guy friend who likes to try and one-up me with dirty haiku. And I talked to my doctor on the phone about a new cardiac drug after making a nutritional shake out of goats' milk. Then I found out someone from the queer literary organization that named my book a finalist in the Lesbian Debut Fiction category called me the S-word.

My friends think this is hilarious. "You are so gay. Maybe too gay for them," wrote one. "Come here & suck my boner, you hetero whore," joked another. I may write a dirty haiku about it later. Right now, I'm going to re-read Audre Lorde, who wrote her seminal essay,"The Transformation of Silence Into Language and Action" after her cancer diagnosis. Lorde knew intimately how the fight against physical reductionism intertwines with a fight against censorship. "For those of us who write, it is necessary to scrutinize not only the truth of what we speak, but the truth of that language by which we speak it," she wrote. "For others, it is to share and spread those words that are meaningful to us. But primarily for us all, it is necessary to teach by living and speaking those truths which we believe and know beyond understanding. Because in this way alone we can survive."

If those words aren't queer, I don't know what is. If those words don't transcend queerness, I don't know what does.

Update!
I have gotten huge support from the literary world and from amazing people around this incident, and my publishers have too. I'm hoping more than anything that the dialogue around issues of inclusion and censorship will continue. Lambda has apologized, and they are taking actions around inclusion – not just for my DVD but also in general. This is just the beginning of a dialogue and process of change that I hope will continue, with concrete action and work toward greater inclusion.

Lambda plans to show my DVD in other readings now, which you can find out about here. Also, there are links to some of the specific venues where the readings are being held: if you have specific accommodation needs that are not being considered, please write to the event organizers or directly to Lambda and let them know.

If you want to voice your thoughts to Lambda about any of these issues, please do by e-mailing: asklambda@earthlink.net

My publishers have been working overtime to make sure none of this has gone unnoticed, and they have been so killer supportive of me and my work that I don't even know what to say. Please read Greg Wharton's account of the San Francisco debacle on the Suspect Thoughts blog here.

And also check out these blogs:

Susan Stinson's blog:
"Peggy Munson and Origami Striptease: readings and censorship"

Max Wolf Valerio's blog:
"Lambda Reading - California salutes us and also -- a femme is censored"

Charlie Anders/Other Magazine Blog:
"Erasure: Not Just A Crappy ABBA Cover Band"

Rachel Kramer Bussel's Blog:
Tonight's Lambda Literary Award finalist reading and Peggy Munson's Origami Striptease

And for more blog discussion on the subject, click here!.

I had to do it: the gag order photo.

2007-03-12T19:16:00.000-07:00

Who Is That Bubble Girl?

I have to live a life immaculately free of chemicals: a bubble life. And by chemicals, I mean, the crap that has infiltrated almost every known product since WWII: the fragrance in other people's shampoo, the Tide and Bounce embedded in clothes, the formaldehyde in cabinet wood, the adhesive holding the imaginary world in place. I'm talking about modernity, and post-modernity, and air fresheners hanging from rearview mirrors; cigarette smoke and wood smoke. In the Tarot deck of access, I'm talking about: The World.

That's why I live a life of virtual exile, down a dirt road far, far away.

After contracting chronic fatigue immune dysfunction syndrome/myalgic encephalopathy (CFIDS/ME) at age 23 – a gripping, crushing, suffocating illness that seized me by the ankles and dragged me under – I thought it could not get any worse.

In the year before, I had been riding my bike between cornfields in Ohio, miles uncoiling behind me. I had prodrome symptoms: a chronic deep cough that wouldn't go away, a sore throat and difficulty swallowing. But suddenly, I was seized by odd bouts of vertigo. Just as suddenly, I came down with a surreal, flu-like illness. I thought I would die within weeks. "Flu-like" didn't begin to characterize the strange illness that had overtaken my life. With a horror movie multiplex replacing my internal organs, I could barely walk or think or function.

I was about to embark on a cross-country move to San Francisco, and state-by-state grew more direly ill. By the time I arrived in the Bay Area, I could barely walk up a flight of stairs. I went to a feminist health center and was chastised about how long it had been since my last pap smear. I didn't have a language for the fact that, in every cell of my body, I was crushed beyond recognition. There wasn't, and still isn't, a way to talk about the debilitating symptoms from neurologic to cardiac dysfunction that stole my life.

Over time, I lost everything: my ability to think clearly, sit upright for more than a short period, work, go to social events, continue my education, travel. I became almost entirely bedridden. Most of my last fifteen years have been characterized by this reality. I learn about social commerce from reality TV.

Despite the inundation of all of those crap TV commercial breaks, nothing prepared me for Multiple Chemical Sensitivity (MCS), a disease afflicting 15-33 percent of Americans to greater and lesser degrees (in my case: greater). MCS gave the postmodern notion of "otherness" Biblical proportions.

The environment is an abstraction to most people: global warming, lawn chemicals, Al Gore. To me, the environment is people, and the products they put on their skin. "Dude! Imagine if you could die from deodorant!" said this stoner that my friend hired to help me move to the woods. Yeah, dude, imagine.

If people use products other than natural, fragrance free shampoo, soap, deodorant, detergent, makeup, and lotion from a health food store, they prohibit me from going to the places they go. They literally bar my entry to doctors' offices, stores, parties, public transportation, workplaces, courtrooms, universities and social clubs. If the products are particularly noxious, like Off bug spray or fabric softener sheets, they prohibit me from going to outdoor spaces. I live on five acres: they get the world.

This isn't some kind of puritanical restraint on my part: an exposure to someone's toxic crap can literally cause excruciating physical symptoms for weeks or months, injure me further or even kill me.

This is our pedestrian war, the one most people may not realize we're fighting, because of what Rachel Carson calls "the harmless aspect of the familiar." The petroleum wars in the Middle East are not just about transportation: 80-90 percent of the ingredients in synthetic fragrance (which is in nearly every body care and cleaning product) are derived from petroleum. Scented candles may give someone "serenity," but they have nothing to do with peace.

The synthetic ingredients in soap, shampoo, deodorant, detergent, and cleaning products are in fact a direct result of wartime chemical industry activity. In the early 1900s, America lagged fifty years behind Germany in chemical production, and most American chemical engineering professors had been trained in German Universities. Once WWII successfully obliterated foreign competition, and particularly Hitler's enormous chemical complex, IG Farben, the American chemical industry achieved rapid world domination, with petroleum and petroleum byproducts as its cornerstone. War chemicals seeped into all aspects of daily life: oh, the delights of DDT! Oh, a burly man on your lonely Mom's cleaning spray! Oh, the empowerment of Dove's "Campaign for Real Beauty," the one based on toxic synthetic ingredients! What a pretty-smelling world.

And what about the insidious weapons of mass destruction? Sarin and other nerve gases are concentrated pesticides, just like the ones people put on their dogs or lick off of strawberries. The chemical industry has made everyone complicit, and created an impenetrable denial about the toxicity of modern products. Occasionally, someone will freak out about one ingredient, such as phthalates in cosmetics. But one ingredient is not harming those of us with MCS or causing new diseases: it's the whole fucking cake.

I bought the innocuous product myth until I no longer had a choice. When I arrived in San Francisco in 1992, I saw a job posting from a woman with MCS and her requirements for an employee were so severe – no products containing scents or essential oils, a clothing change at her house – that my friends and I just laughed. Imagine being so Karmically stupid!

When I later posted a job listing – with much the same wording as that woman in San Francisco – someone having a manic episode wrote me: "You sound fascist. Pernicious soul. Ever hating Jew. I am God. I am beautiful. Write back!" and "Maybe MCS is what you deserved. Just remember, when you [are] fucked over by life: Karma happens. Not everyone loves Burt's Bees, you know. Good luck in the woods, dying off, you old hippie."

This person has a psych disability (perhaps caused by neurotoxic chemicals too?), but s/he did hit upon some collective unconscious fear and loathing. This kind of bile is just as easily (and powerfully) expressed in daily gestures, and I'd rather have harsh words than destructive chemical insult. Sticks and stones cannot hurt me, but I live my life on the edge of becoming the next Cindy Duerhing – an MCS activist who died after an extremely isolated fight against the disease at age 36. Or Dan Allen, a football coach from Boston who died of MCS complications in 2004. His infectious team spirit could not rally the world to change for him in time to save his life. Can mine?

Learn how and why to be fragrance free.

Watch the amazing MCS film Exposed on Free Speech TV. "EXPOSED is a cinematic portrayal of Katherine, a 35 year old dancer who suffers from Multiple Chemical Sensitivity (MCS), a chronic condition caused by exposure to synthetic chemicals in consumer products, pesticides, building materials, exhaust, tobacco smoke, perfume, cleaning agents, food additives and others. While skeptics, particularly in the traditional medical field and the chemical industry, still question its legitimacy, for Katherine it is a debilitating everyday reality, forcing her to live outside of the norms of her society. By Heidrun Holzfeind."

Learn about MCS and chemical issues on Antidote Radio

Watch this brief clip of a mouse exposed to new, synthetic carpeting, experiencing the physical effects of neurotoxicity (Anderson Labs).

2007-01-09T19:11:00.000-08:00

When Pigs Glow

It's the sadist in me: I often make houseguests read me my favorite children's book, Oink, which tells an entire story about a mama pig and her piglets with one repeated word: oink. But last night I was reading the news and screamed: What the fucking oink? Chinese researchers just bred the first transgenic pigs with glowing green organs and Disco-rific body parts. They created radioactive-looking swine by injecting phosphorescent green protein into pig embryos. These are the first human-tampered pigs to glow from the inside out .. hearts and all.

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The same day, it was announced that researchers had isolated stem cells from human amniotic fluid, once again making the religiosity of stem cell bans a senseless tirade of uninformed extremists who likely serve to profit from the temporary barring of this technology from US citizens. Effective therapeutic stem cells can now be derived from bone marrow, umbilical cord blood, human blood, and now the fluid from the womb. So why can't patients get cells derived from their own bodies?

It's a little-known fact perhaps that, from a legal standpoint, we don't own our bodies. Certainly, we have eliminated some of the overt exploitations and chattel mentalities around human flesh. But the patient .. she who waits .. may not even own her own cells, her own blood. Legal battles have raged over such things. And patients have strategized the best way to crawl through the doggie door of medicine and beg for their bodies back.

Why is this? At the core, it's about the bigotry that never speaks its name: ableism. This bigotry has little to do with religion, although it is conveyed with great religiosity (and has been justified by many religions over the centuries, including Christian Science and the New Age). It poisons the right and left and center and every corner of politics.

I think of Christopher Reeve, man in an iconic Superman suit, man felled by a spinal cord injury, rich man at the mercy of personal care attendants (who sometimes endangered his life), inhumanly capable man unable to go beyond the slightest -- yet most triumphant .. twitch of recovery due to a cruel and archaic mentality about the disabled body's indentured servitude to a Calvinist culture that feels vastly uncomfortable about physical debility.

A disabled man in our culture is always seen as a (fey) man in tights. Not a Superman but a lesser man (I love how guys from the Krip-Hop troupe 4 Wheel City say on their MySpace page: "ladies . . . don't let the chairs fool ya, ya heard!"). A disabled woman is viewed as hysterical (still) and asexual (please!). A disabled person of any gender is prey to the most primal Darwinian impulses, the most inhumane cruelty, impassable steps and ramp-less temptations. Disabled people are battered and abused at astronomical rates, but the biggest cruelties are mundane, pedestrian in the truest sense. On second thought, even pedestrian cruelties are reserved for those who walk. To those in chairs, those hobbling along, those with a crutch or cane or immobilized, even the playful thruway of daily hazing is usually inaccessible. Cruelty of the modern world to those with disabilities is more reminiscent of a Jim Crow psychology: the disabled are subjected to relentless deprivation and invisible signs saying Keep Out. The fight of the disabled is a fight to get through the door. It's an enigmatic fight, a fight against a crevasse. So often, the disabled spend their days explaining the trauma of deprivation.

But it's so basic.

What is shut out is never witnessed. What is never witnessed is disbelieved. Isn't the pain of absence .. the very rationale for solitary confinement .. intuitively the cruelest punishment? We all know by instinct what it means to be rejected by a herd. To be the lame elk, the bird afraid to reveal its weakness until it falls from the perch. It's so easy to shut out the disabled from cultural dialogue: just don't put in a ramp. Just forget the Sign Language Interpreter. Just wear scented products that cause people to go into anaphylaxis and risk their lives.

I wonder about the essential anxiety behind giving people medical/visceral authority. Are the not-yet-afflicted .. those in the eternal white gloves of eternal flight .. afraid the disabled will rise up and become Bionically reactive against the indignities they have suffered? Perhaps people think it's cuter (read: non-threatening to a dominant paradigm) to see a pig with a glowing nose than a righteously indignant former gang member asking for wheelchair access. Or stem cells. If we are freed to own our own bodies, to alter them toward our freedom, what kind of power might we seize? Frankly, I can't wait to see a whole shiny army of disabled folks once treated worse than social swine rise up and take their righteous place.

I ponder the juxtaposition of Superman's cartoon reality where glowing kryptonite could fell a superpower, and the mere mortal .. Christopher Reeve -- spending his last years fighting for the triumph of moving a finger. I couldn't believe the way he died: felled by a bedsore. It was a perfect metaphor for the reductionism of this cruel regime that denied him healing. Then his lovely wife who illuminated and articulated the stem cell struggle succumbed to an improbable cancer. Since their deaths, we have hardly progressed in disability rights or stem cell access in America.

I read this amazing interview with Todd Haynes, the filmmaker who did the seminal movie about multiple chemical sensitivities, Safe. The film was widely misinterpreted when it came out in 1995. Many in denial about the toxic world and its resulting disabilities thought it was a parable for AIDS. Haynes actually lobbies a subtle critique against the Louise Hay-ist New Agers who damned the sick for being sick. As Susan Sontag asserted, disability and illness are not metaphors: they are roulette realities and that's all. As Haynes stated in this interview in Filmmaker Magazine, his character represented the most vulnerable part of life, and in this she was inherently terrifying: a horror movie. There's no use complicating the issue. Fragility can engender great fear, but without it there is no glow to existence, no real light.

And that's what this stem cell thing is all about. Fragility. Fear of it.
There's nothing safe about any of it. We can't wait until people are hermetically sealed off from their fears. We have to give people all the tools they need to equalize their chance of survival and access. Is this too much to ask? Those born under the Year of the Pig are supposed to be chivalrous, gallant, possessing strength and fortitude. It's the Year of the Pig. Give me a gluttony of hope.

Peggy's Blog

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