Thursday, December 03, 2009




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

Thursday, October 22, 2009

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:


Saturday, October 17, 2009


"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.


Friday, October 09, 2009

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





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





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





_____________________________________________________________







WHITTEMORE-PETERSON INSTITUTE





__________________________________________________________



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."