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


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


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!


Tell your friends. Spread the word. Come protest together.
7 AM ... March 24 ... You must be on time!

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


Liz Willow said…
Excellent blog, Peggy!

YES, we can and should ACT UP!

We can't do it in the same manner as the the AIDS community did, but we can adapt their tactics.

Why not Lie-Ins? Even a few people with sleeping bags and comforters lying down at critical places, preferably where the press is already expected to cover another story, would have an impact.

ME/CFS patients are a creative bunch and angry enough to come up with some great ideas.

We don't have a quilt, but we are working on banners of socks (the Sock It 2 ME/CFS project).

And I bet other ideas (and actions) are coming.
Khaly Castle said…
Perfectly said! The CFS community at large has suffered oppression for a long time. We were just talking about the "Stockholm Effect" amongst a few of us, and how hard it is to break out of that pattern. Now is the time, the time is now. We actually have the upper hand, we just need to get moving, get busy, and seriously act up.
Thanks for this, Peggy.
Creek said…
Welcome to Sock It 2 ME/cfs:

We could use some well people to help. AIDS sufferers didn't do it alone. Their healthy lovers and friends and neighbors pitched in to help raise a ruckus.

Let's see some community!
Unknown said…
Peggy: Thank you for this incredible blog.

Dear Dr. Fauci: No, I won't kill myself. No, I won't shut up. And no, I won't use my inside voice.

Wildaisy said…
Thank you, Peggy! This is so exciting! We who suffer from ME/CFS are tired of being ignored. Your ideas are wonderful!

Patricia Carter
Anonymous said…
Incredible writing and history! Many of the 'newbies' to ME/CFS need to read this!

Us oldies are ready; we are going to use every bit of our energy to act up and act out! The videos people are making of themselves (go, Rivka!) in front of government buildings is just the type of thing we need; the Ad coming out in the Washington Post via the ME/CFS Worldwide Patient Alliance will inform the public of the danger they are in, of the desperation of the lives of our silenced patients, of the civil rights violations by the DHHS, NIH, and CDC, and of the demand for immediate clinical trials for any patient diagnosed with ME,CFS,XMRV+ and others with NeuroEndocrineImmune Disorders (NEIDs).

You can help:

Be a part of history!

I am not touting "my own efforts"...I am telling you about something that is by the patients, for the patients and their families, and supporters.

Peggy, you have given an invaluable lift to me and the rest of our community, and I hope every person who will be attending the CFSAC will take a camera and signs and camcorders and act out in front of the building before you enter it, at lunch time, on breaks, etc.!

Bless you, Peggy!
Peggy said…
I want to post this comment that was sent to me privately, but the writer was not able to post:

my comment:

Right on, Peggy!

Fully agree, and have suggested the same to others many times. I did ACT-UP demonstrations, actions and organising in Los Angeles in the late 1980s/early 1990s, so know first hand of what you speak.

But our problem as patients is that most of us are just too sick. I am. I've had four multi-month crashes in the last year after exertions that would be trivial or common for healthy people. I can't rev up the internal engines in any way anymore without risking weeks of bed-bound, mind-jumbled relapse.

Peggy, what can we do? ACT-UP got loads of healthy people onto the street because, as we who were there know so well, we were indignant, enraged, at the vicious homophobia of society's neglect and hostility towards AIDS patients that left our brothers dying without care or cure. The way AIDS patients were abandoned by medicine and government was like every whiff of society's anti-gay hatred writ large - and damned if we were going to let that go on without a fight - and fight we did.

The problem now is that no one cares about us ME/CFS patients as a group, because we represent no particular oppressed subculture beyond the illness, and thus incite no political outrage beyond the disease itself to tap into to draw healthy people to our cause. And we who are ill and most outraged, are at the same time the least able to rise up and fight on the streets as ACT-UP did so marvelously back then.

It takes everything out of me just to write these three paragraphs, will be wiped out for the rest of the day, or more, now. Any thought that I could rise up and contribute to protest like in ACT-UP days is hopeless. Peggy, you are absolutely right that we must emulate ACT-UP's fighting tactics, but how with these bodies and minds so crippled by this cursed illness?--
Peggy said…

You raise some excellent points, and when/if I can find the energy, I want to talk about how we can mobilize such efforts -- and by "we," I mean, all of us, and especially those of us on the far fringes, trapped in our beds and homes. I also want to commend the efforts already mentioned in the comments, and encourage people to participate in the activist efforts already in progress, however they are able. Here is a good summary of some of them:

On the topic of outage, however: it's true the outside world doesn't share our outrage, but some of this problem is due to misinformation. I am right there with you: getting revved up makes us sicker, even writing a comment makes us sicker, so how do we get things in motion?

As someone who participated in ACT-UP, you have an invaluable piece to contribute. Please remember that while we can't use the exact tactics of ACT-UP, we can borrow from the principle that they *used what they had.* They had to really spotlight the problem of homophobia, and how it worked against those with AIDS, and some of this involved flushing out the bigotry, making it show its ugly face -- without this, I don't know that legions of supporters would have come along (as they had to be told how to *see* what the gay men dealing with both AIDS and homophobia already saw). I invite anyone reading this to brainstorm what this might mean for the homebound and bedbound: if people can get outraged about the Tuskagee Syphilis Experiment (which did not involve outright killing people, but denying them treatment as they lapsed into increasing pain and disability and ultimately died) then I actually do think there's a way to get people to share the outrage of this quarter-century horror many of us have lived.

Yes, our invisibility works against us, as homophobia worked against those with HIV/AIDS: but they did use that in their favor, and this was genius marketing and activism.

At this juncture, we need those AIDS activists -- they know the ropes, and progress could benefit both groups. I encourage you if you're able to look up any ACT-UP folks you worked with in the past, and tell them we need them.

Have faith -- if you saw what you saw, you undoubtedly saw seemingly hopeless patients pulled out of the grave and given life again. We can get there.

Anonymous said…
Peggy great idea!!!
So we need to decide what we are going to do, set a date, spread the word and then ACT-UP!!
We need people to help co-ordinate this.
Maybe call it a "LIE-IN", "LIE-DOWN", "BED-IN"?
For those who wont be able to make it to any public place we could set up a website so those people can log on and have a virtual "LIE-IN".
Friends, ME/CFSers, everyone lend me your ideas :-)
zac said…
I wanna send a couple of my old mattresses onto the lawns of the CDC. Maybe drop them out of an airplane.
Holy Way said…

This has got to be the most inspiring, timely piece I have ever read !

For it feels like all we do, in the ME world, or in Khaly's Neverwhere, is just talking to each other.

Oh, I'll post something on CoCure ...

Oh, I'll say something on this or that discussion forum...

And think I've done something.

Unreal, insular, desperately isolated - not just my wife and I after 17 years of this, but the ME scene - to me anyway.

Talking, talking to who ??

THIS though is good, this gets the blood flowing in the veins , the creativity roaring , again.

Oh yes, we ACT UP : Videos, art, music.., Linda and me... Yes, there is SO much creativity, especially here in this awful place, that we have barely begun to tap.

What works most I have to say, though, is SPEAKING UP. Going right to the very top, never ceasing to struggle, to demand, on an individual level, proper biomedical tests and treatments.

That's such a long, lonely, path. It's a start ...

Peggy your post will help keep me going.
Anonymous said…
Peggy, thank you so much for speaking for so many of us who want to see ACT UP style advocacy. We do have a critical window of opportunity to influence our government, because of the connection established between XMRV and ME/CFS.

I have been ill seven years. I could (and probably would) relapse severely after taking certain types of political action, as well as their possible, legal consequences. But I would hope for the best and take the chance, if I thought I was involved in a well-thought out, committed campaign to end our government's abuse and neglect of patients with ME/CFS.

None of us want to be any sicker, but isn't that exactly what we will be if we can't change our government's mind about how easy and profitable it is to ignore us?

I also believe that we need to make ourselves visible. So I am in favor of not only lying down, but chaining ourselves in place. Preferably to hospital beds we have rented for the occasion. It's much too easy to haul people away before they can have the press conference, otherwise. (Maybe there are logistically easier ways to make ourselves visible; but this is surely the most comfortable.)

Yes, we have to get help and support from family members and friends, whenever possible. I'm sure mine will come and bail me out, if necessary.

Kim Deneris
Chai said…
Thank you for a very good blogpost!

I totally agree with you. We need to learn from the AIDS activists, but as others have mentioned we don't have the energy to march the streets or arrange other "happenings".

The person who commented via email said:
"The problem now is that no one cares about us ME/CFS patients as a group, because we represent no particular oppressed subculture beyond the illness, and thus incite no political outrage beyond the disease itself to tap into to draw healthy people to our cause"

I've been chewing on that one for some time and the only thing I can think of is "contempt for women".
In Norway there has been stories of doctors writing the letters SVBK on medical journals (before the journals got digitalized. The letters stand for (in Norwegian) Svie Verke Brenne Kjerring. Translated to English: Smarting Ache Burn Hag. This was how some doctors reacted to female pasients who repeatedly came to get help for, among other things, pain.

If we could get the attention of the feminist movement (or whatever is left of it ;-) ) maybe we could get some help from them?

Now some will say this isn't a womens disease, and they are right! My answer to that is: AIDS isn't just gay mens disease either, but it was the gay who started the fight. We need to get the fight out of the computers and on to the streets! Because we are not able to start marching ourselves we need someone else to do it for us. Feminists have the knowledge of how to change the world

Hope this made any sense. Sorry if my english isn't the best.

Best wishes from Norway :-)
caledonia said…
Here's my big idea - a virtual wall of YouTube videos from CFS patients. The unique thing is that they would be all linked together, creating a never-ending video that would have impact because so many are so severely affected.

First PWCs would make a very short (10 second?) video of themselves saying, for example, how long they've been sick, and how disabled they are. If they're lying in bed, or look really sick in some other way, all the better.

Then, how to link them? There are a couple of ways to do this. The first way would be to have one person edit 50 or so of the short videos into one 10 minute video. There would be say 10 of these videos in total (with 500 people). Then each separate video can be linked either by a playlist set up by the editor, or by a video annotation with a link to the next video, or by a video response to the previous video.

The other method would be to have no central editor, but to have each video annotated or "reponsed" to each other. I think one would lose viewers though as you would have to wait for each video to load.

Then would would have some kind of press release, demonstration or something to bring attention that these videos are the web.
Anonymous said…
Here's my take:

1. We hold a "lie down" in front of the CDC or NIH. Every person that can attend or send someone healthy to attend be there on a certain date and time. For everyone that can't be there they send a picture which gets blown up into a poster size that we stick on the lawn of the CDC by those lying down. That way EVERYONE who wants to participate can be represented.

2. WE contact Michael Moore to come do a documentary.

3. WE invite all media we can think, radio. talk shows.

4. Our slogan can be XMRV affects EVERYONE and is as deadly as HIV/AIDS. (like breast caner affects EVERYONE, B/C EVERYONE HAS A MOTHER, DAUGHTER, SISTER, ETC)

5. WE team up with Prostrate Cancer organization. It's been tied to both so let's use everything we can.

6. That same day the ad goes in the Washington paper.

7. WE create ONE COMMITTEE, ONE WEBSITE. ONE VOICE and put links on it to all the forums, blogs, causes, etc.

We first have to put aside our CFS internal politics and actually join together. There are too many groups and forums, etc. to keep up.


WE HAVE TO GET IT TOGETHER FIRST. Our website can be "I AM XMRV" and have faces representing every color, age, etc. etc.

Who can help me start a website with links and a sign up sheet? I will do it!

Or maybe someone knows a group of college students that could take it on as a class project? Imagine what they could put on their resumes
Anonymous said…
Loved Zac's idea - thanks for the visual, it made me laugh.

Think the 10 second video and stringing them together in a ten min video etc - is a great idea.

Also some hard hitting, gritty, alarming video - aimed at the healthy segment of the public - so it goes viral.

I have had the same thoughts as CHAI.

Oslers Web reported that CFS broke out down the West Coast at the same time as AIDS. They called it little Aids. But the medico/research professions were not interested in little Aids, because it was just a bunch of women - and it was thought that it was more likely to be hysterics than anything real.

HIV got the money because it was afflicting the under pinnings of the power base of Society: men and mens ability to have sex.Forget the women.

People say - yeah but the AIDS patients were dropping off the perch. I say: seen the CFIDS memorial wall? Note the age and duration of illness - to date of death? Note any differences between that and the early days of AIDs. I dont. Some AIDS patients only lasted a short while after onset, and some lasted longer. The same pattern can be seen on that memorial wall. Go take a sobering look.

The simple fact is, that women with this illness are so invisible and so irrelevant, that they dont even have the cause of death: ME & CFS end up on their death certificate.
Not acknowledged in life and not in death. We are dropping at the same rate as they did in the early days of AIDS - but like our illness - this too is conveniently hidden, so that we can be kept in our places. And of course what do we do? We comply like the good little women we have been taught to be. .

And if we ignore the gender bias, then we leave them with the power to continue to do what they have always done: dismiss us.

I am sure if you dug a little you would definitely see $research gender bias.

Lets call a spade a spade and get on with it. Lets use the obvious prejudice to take back our power.

Lets call in the sisters!They wont flinch from this fight.

Anyone have Germain Greer's phone number?
Anonymous said…
Even though I've been sick with ME for over 13 years now, and am desperate to get well, where is the proof that XMRV or the other MULs are the cause of ME?

I think we should find out first, before possibly making fools of ourselves.

I respectfully and especially disagree with pancho's statement:

"Our slogan can be XMRV affects EVERYONE and is as deadly as HIV/AIDS."

We don't know that at all! Ten times as many healthy people have XMRV compared to people with ME, and they're full of energy.

It may be a retrovirus, but that doesn't mean it is as deadly or even as disease-causing as HIV.

And to 'anonymous' above, HIV patients were in fact "dropping off the perch" until effective drugs came along. It is a myth that some folks live with HIV for 10-12 years without getting sick. A MYTH. Maybe 10-12 months, but that's it. I've been to the wall.

I know you mean well Peggy, but I think a demand for more research in general is the way to go, rather than proclaiming XMRV is the sole cause.
Peggy said…
For those who want to take simple action now, check out: -- click on the "Groundswell campaign" on the right column to participate. And please volunteer to help with the website!

We need a global community, so I hope everyone who responded will join in!
Anonymous said…
Absolutely "We need to get the fight out of the computers and on to the streets!" Everybody is preaching to the choir. Forget "advocacy"; DECLARE WAR on the CDC and focus your wrath outwards where it will do some good.
Lee said…
As soon as I read this article, I thought: "Bed-In." It looks like some other people thought the same thing. I'm bedridden right now, but if my condition improves, which does sometimes happen, I would try to make this happen. I imagine beds and quilts in front of the CDC, a lot of literature, a lot of visibility, lying there until they take us away.

I wish I had been more aware of us as a community before I got too ill to do anything out in the world. I do think we are gaining visibility.

One passing thought I had: Democracy Now! takes submissions for story ideas, and I think they might be really interested in us if we present it well. If I write them, Peggy, do you mind if I refer them to your website? You are eloquent and passionate.

Thank you for the inspiration.

Justin said…
Wonderful post. I completely agree. It's disgusting that it's come to this, and our health will be endangered by being more active, but we have to do something, anything to get the attention we need to get the medical attention we need!! We will not take crumbs! ACT UP!!!
Peggy said…
Hi Lee, Please do feel free to forward my blog to Democracy Now -- and great idea about approaching them.
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