Gender: Female
Age: 40
Sign: Sagittarius
Country: US
Signup Date: 6/1/2006
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October 31, 2009 - Saturday
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 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.
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:
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October 18, 2009 - Sunday
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Read Part I Here
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 andalternative) 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.
"'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.
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October 18, 2009 - Sunday
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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/oralternative 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.
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October 9, 2009 - Friday
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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.
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."
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March 14, 2009 - Saturday
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Hey, Susie Bright's interview with me was on the most popular blog in the world (BoingBoing) as ranked by Technorati. Read it with reader comments here. Also, Jodi Bassett of my favorite ME/CFIDS site, A Hummingbird's Guide (where you can also learn why ME is the preferred term and CFIDS needs to go), wrote a great review of Pathogenesis: Review of Pathogenesis by Peggy MunsonNoelle Kocot describes Munson's work as "free from a lot of the burden of contemporary poetry conventions, [existing] like a small island in the fiery sun, alone, yet willing to be utterly beautiful, utterly strange and utterly itself." After reading this book, I'd have to agree. I know very little about poetry, and to be honest I dislike most of the poetry I’ve read, but I got so much out of this little book. Peggy’s use of words is so unique. So clever. I’m now a dedicated poetry convert! Pathogenesis made me cry within just a few minutes of starting reading. Admittedly I have the same devastating and disabling neurological disease (Myalgic Encephalomyelitis) to a similar severity as Peggy, so I could really relate, but even without that, this book is just so powerful. I can't imagine anyone with any compassion or humanity coming away unaffected. It's unlike any other poetry I have read, it is so beautiful.... and at the same time so, so sad. Readers get a brief taste of what it is like to live with a devastating neurological and cardiovascular disease, as well as how much the extreme level of suffering is increased when you have a disease that is subject to a publically accepted campaign of misinformation, misrepresentation and outright lies, for mere financial gain. When you are so ill but get almost no appropriate medical care, or are treated unfairly and cruelly by friends and family, because of these same scientifically unsupportable lies. The last poem in the book in particular just kills me. The book is also beautifully and simply designed. Peggy Munson is immensely talented. Those not familiar with severe M.E. can have no idea what an achievement this small book is, and how much pain and suffering must have gone into the writing of it: just a few minutes at a time each day. Each minute spent writing having an immense physical cost as well as being very difficult due to the profound cognitive problems caused by M.E. If you are a poet, I think this book will inspire you to write. If you love poetry or just love the clever and unusual use of words, I highly recommend this book. It’s a little gem. -- Jodi Bassett, A Hummingbird's Guide
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February 26, 2009 - Thursday
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The ice storm had turned all the streets to melamine. The trees slid out from hugs. The houses were dumped out of a Monopoly game, so uniform that children dreamed of opening the wrong door and forgtetting which home was their own, then being severed from their parents and swept off to foster care. No one could walk down sidewalks without courting tailbone injuries. It was the seventies and Jack was ten. The husbands traded in their shovels for guitars, and streets were not plowed for the weekend as the faithful had relinquished organized religion. Children pulled their siblings on small sleds.
The kids all loved the ice storm. They lived for the divinations of a weather-vengeful God. There were some tragedies each winter, though. A populist law was enacted for the kids under the age of twelve, as frankly, parents thought the governance of trees was adequate. The cold made the guardians too reckless. "Just have fun!" they told the kids, as they prepared to toke it up with seven long-haired neighbors who would singe the carpet shag then laugh about it later. "Button up your coats."
It might be easy, looking back, to criticize the level of distraction, but the kids loved being sent into the grim Grimm landscape, even if they should have been afraid.
Then again, there were some casualties.
-- Origami Striptease, p. 176-177
I have been wanting to write more about the ice storm, the worst ice storm in 30 years in Western Massachusetts, but I have been too ill.
When they put me in the ambulance I had a needle in the center of my head. It stayed there all day as I tried not to be seen as a medical freak, asking about chemical-free accommodations and air filters. My acupuncturist had gotten to my bedroom first. I was blacking out but it wasn't exactly syncope: it was more an end-of-days blacking out that was hard to describe. Earlier I had had the chest tightness and shortness of breath that was recurrent despite a year of antibiotics that had improved but not resolved my horrific cardiac symptoms, which consisted mainly of a crushing/squeezing sensation around my visceral heart. The power had returned after two days of outages and a fight against impending hypothermia, and then, when I was alone again, the lights flicked off. That night was a blur: at some point I tried to build a fire in the woodstove to warm myself as the temperature dropped, something I can't do both because of chemical sensitivities (to woodsmoke) and exertional limitations (from ME/CFIDS) and I did myself in. Hanging over the side of my bed trying to get oxygen to my brain, still blacking out, delirious, wearing three sweaters from the ice storm, I called 911, something reserved for the most dire of circumstances as I knew the hospital -- due to my sensitivity to chemicals and the chemical and fragrance exposures I would endure there -- could kill me and would almost certainly injure me.
I had just finished opening the last of my presents about an hour before the lights went off on the night of December 11th I had turned 40 the day before. The last present I opened was a set of gorgeous silk pajamas from my sister Molly. I had no idea I would be spending the next few months -- maybe years, maybe forever -- in pajamas. In retrospect, all of it -- turning 40 and people's warnings that life would change after 40, the pajamas, and the vague feeling I had had in the days before that I could not envision the future -- seemed like foreshadowing.
Almost ten weeks have passed since I got back from the hospital. I'm not sure I'll ever get out of this room. I have been sicker than ever, chemically injured by my stay at the hospital. I cannot speak out loud as it winds me too much. I can barely be online. I can't watch TV or listen to music. I can't talk on the phone or listen to my voicemail messages. I'm in a sensory blackout. My amazing friend who came to take care of me (more on this later) comes in and hurriedly drops off food, we pass notes, and that's my social contact for the day. Any noise or stimulation makes me a lot sicker. So I spend most of the time lying on the bathroom floor -- just a few feet from my bed, with my feet propped up against the shower door, meditating (this is as far as I can go from my bed). I am hoping to get out of here alive, maybe even intact, maybe even a little bit healed. We'll see. There are no guarantees in life and certainly not with my diagnoses. One of my Zen books says the time to start practicing Zen is when there are no other options. I think this might be one of those times.
In the hospital, they all were talking about it -- the ice storm -- though the Valley where the hospital sits had been eerily unaffected. One nurse whose power went out for five days told me how she went to a building where a lot of homeless people gather and just put her head down on a table and cried, utterly exhausted and distraught. For people who can get out, get supplies, use wood stoves, chop wood, etc., maybe it was no big deal, but for disabled people and a lot of other folks it was a huge natural disaster.
When my Mom drove me back from the hospital, 20 miles to where I live, snow was coating the windshield and my Mom had her nose pressed forward, her knuckles clutched, and we saw the trees downed everywhere, littering both sides of the road, trees that had just snapped from the weight of the ice. Another friend with ME/CFIDS still hasn't recovered after suffering the early stages of hypothermia. I am pretty sure the local newspapers reported no casualties.
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December 15, 2008 - Monday
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I know this ice storm in New England was potentially lethal for everyone, but the past few days were harrowing for me. I turned 40 on Wednesday, and on Thursday night the power went out – and stayed out for almost 48 hours. The temperature was around 15 degrees Fahrenheit or less at night and for much of the day, and my life turned into a Jon Krakauer novel very quickly. With multiple chemical sensitivities (MCS) everything is inaccessible (so if you're an EMT, firefighter, hospital worker, M.D., nurse, or shelter worker, think about this). Calling 911 is generally out of the question, emergency rooms are full of toxic cleaning chemicals and scented people, and the carbon monoxide from generators or the toxins from wood smoke can be particularly dangerous or lethal (and hotels: forget about it). Because I was weak and sick going into the outage, I was suddenly like that guy in Into the Wild – picture the end of the movie version of the book – who has eaten the poisonous seeds by accident and thus orbiting around this tiny space, trying to stay warm, totally screwed. Fortunately, the power is back on, and I made it out alive. I might post more of the story at some point, but right now I'm just waiting to hear from some other sick friends who are in other parts of Western Mass. and don't have power and/or power and phones. I just want to remind everyone to think about vulnerable neighbors this Winter, and don't assume people don't need more help. The kindness, action, and advocacy of both friends and strangers got me through the past couple of days (and I can't thank them enough), but it was pretty hairy for awhile, and I know how easily people's needs can be forgotten when the world assumes that everyone can get to a shelter, hospital, or friend's house. This video was shot some distance from where I live, but it depicts pretty much what the scene looked like here (I can't find much footage on YouTube from W. Mass., probably because people are just getting their power restored). Beautiful, awe-inspiring, and scary: Lots of trees and tree branches were blocking the roads in W. Mass.:
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November 16, 2008 - Sunday
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 The lovely Susie Bright interviewed all of the authors of her new anthology, X: The Erotic Treasury, which is a very sexy coffee table book in lush packaging that has come out just in time for the holidays. Here is the interview Susie did with me!  Peggy Munson"Fairgrounds" http://www.peggymunson.com/ Have you ever won an award for any of your talents? I was a finalist for the Lambda Literary Awards in Lesbian Debut Fiction -- then censored by Lambda because my work was dubbed "too straight." I also won the spelling bee in elementary school, ultimately choking on the word "gangrene" at regionals. Tell me how you would cast the film version of your story... just for fun! Lead Girl: Chloe Sevigny Daddy Billy - I would do a cattle call for a gruff no-name butch stud Octopus Man - William H. Macy Octopus Man's Girlfriend, Cherry - Kathy Bates, wearing something spandex-y from Target Octopus Boi - Rufus Wainwright playing a disabled tranny boi Random Carnies - Other Wainwrights What kind of reactions have you had to your story? It apparently became a big deal on a locked bulletin board for amputee fetishists... As far as I could tell, amputee fetishists were doing untoward things with prosthetics while rolling around on a giant Braille scroll of my story -- or something like that (sadly, I never got in either)! As for reactions, someone turned the story into an incredible dirty poem. It was translated into Italian. I performed some similar work by video later at a couple of disability-focused erotica events. What is your own life "in the circus"? Did you like carnivals as a child? My own experience with carnivals looked a lot like David Foster Wallace's essay on the Illinois State Fair. Those Illinois fairs (the McLean County fair, the Kroger parking lot fair, the annual Corn Festival) spelled out my budding erotic: mostly the image of the 4-H tent with its neat stitches and carefully hemmed adolescent desires swirling around absurdly delicious cakes and then abutting the swine tent with unapologetic grit and dropped corn dogs covered in Carny cigarette butts. My whole erotic feeling is something akin to picking up the dropped corn dog, taunting the swine, eating as much cake as possible, then letting out those so-perfect seams. What's so hot at those fairs is the sense of hemmed chaos that is about to break, as the footpaths get rutted and muddy, the carnies lose their patience and do sadistic things with ride gears, and the cut-off jeans get snagged on teenage lust. Do you hear from people saying, "Oh dear, you're making our oppressed minority look bad, can't you be more sensitive...." or is that era over? Frankly, I don't think disabled folks ever even got enough recognition to get on the p.c. radar. I took a course at Oberlin called "Theorizing Race, Class, Gender, and Sexuality in Contemporary Capitalism," where we sat around in a circle talking about the intersections of our so-called oppression— but disability just did not exist. Disability has always been in a fringe space, fringe mainly because it is all about the body and all of the aspects of the body that freak people out. So disabled people usually don't get worked up about radical sex because they are used to their bodies being put under the most literal microscopes, poked and prodded and subjected to telethon-esque social freak shows. Even the conservative disabled bodies are just, on some level, living a queer sexuality. So when someone comes along and writes about disabled bodies seizing pleasure, disabled folks are generally psyched about the visibility and the notion (not often shared by social institutions) that sexual pleasure is their birthright. In contrast, even the most open-minded sex radicals sometimes flinch at the idea that some people find prosthetic legs as hot as prosthetic cocks, insane levels of transcendence can bloom out of physical restrictions, and injured young veterans are damned well going to fuck their girlfriends when they get out of the rehab hospital. I was just re-reading a 1999 essay by Patrick Califia in which he talks about how, when he became a sex writer with an acquired disability, people were "so overwhelmed by cognitive dissonance because of my disability that they've literally tried to take the cane away from me." Do you think limited mobility and kink have any special understanding together? This is a fantastic question -- and yes! I was thinking about how, with an illness characterized by immobility, it's so hot for me to hear a partner snarl "hold still" or "don't you dare move" — or even just to move my limbs around like a ragdoll. It's something about recognizing all of the receding corners that are in a person --whether those are dark fantasies, literal parameters, or limits that can be pushed a little bit. Lovers who never fuck in rote mode, who just learn where the lines are and exactly how to thrill on those tracks, are the hottest lovers ever. Plus there is the inherent social queerness of disability that just makes it kinky. There is also a discipline that can come out of sex with a disability, a honed Zen-like awareness. Imagine you have pain all over your body, and what it means for a lover to just run a finger along the one place you feel pleasure, the increased valuation of that pleasure in contrast to your daily life. Disability also often forces reinvention, which can just make even the most placid activity kinky. I have had to study all of the textures of stillness. Lovers have appreciated both how embodied I have to be because I have to stay attuned to my physical status, and how non-literal I am about the body at the same time, because I'm used to adding and subtracting extensions to the flesh in all sorts of ways. What comes to mind when you consider your ancestors? My aunt did some genealogy and found abolitionists as well as Amish in my family tree, which explains why I think this Amish tradition called "bundling" is really hot (it involves lying with someone under a quilt and seeing how long you can resist temptation). My recent ancestors on Mom's side were Germanic farm stock, John Deere to the marrow, and I grew up the youngest grandchild of some huge farm families that had amazing. My Dad was part of the local media (with the morning radio drive time shift) before everything went corporate. My aunt worked as a criminal pathologist at the LA County Coroner's Office, which handles most of the famous Hollywood autopsies, and this always brought a freak element to holiday dinners, when it wasn't unusual to hear about an autoerotic asphyxiation case while Grandma was dishing out mashed rutabagas.
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October 23, 2008 - Thursday
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The candidates are talking about it, the pundits are talking about it, everyone is pointing fingers and assigning blame, but it turns out Billy Joel was right – the epicenter of the problem is somewhere near Allentown, PA. Yahoo News reports that Elizabeth Feudale-Bowes, aka the woman in "the bubble," is causing real estate values to tumble in her neighborhood, creating a ripple effect that is scarring the whole nation. Feudale-Bowes lives in South Whitehall township in what looks like a modern steel-and-porcelain shed, not so different from what you would pay a hefty sum to purchase if you were buying it from a hipster shed company such as MetroShed. Granted, her accessory dwelling has a little bit of a 4-H agricultural tent feel to it, but the environmentally-safe 160-square foot residence is more aesthetically pleasing than most safe dwellings I have seen (and certainly most dilapidated sheds). Paranoid neighbors are terrified that Feudale-Bowes living space is "unstable and so unsightly it could drag down their property values" and thus a judge has ordered her to tear it down by the end of the month, citing permit violations. What was the name of that 4-H animal that was smeared with blood and sent to the edge of society to repent for their sins? Do these neighbors not realize their property values are plummeting for reasons other than a sick woman living in a structure slightly bigger than an animal pen?  Feudale-Bowes has environmental illness, aka multiple chemical sensitivities. She was diagnosed by the nation's preeminent MCS specialist, Dr. William Rea – a man so heroic that, like many doctors with MCS, he has been living under threat of having his license revoked. Many people with MCS appreciate Feudale-Bowes shantytown style of architecture, since they spearheaded the green shabby chic movement that has been co-opted by many small-scale green builders. A number of people with MCS in fact live in makeshift structures in a makeshift community outside of Dallas, for the sole purpose of seeing Dr. Rea for medical care. Their "homes" are typically old pull trailers that are lined inside with many coats of special sealants designed to seal in chemical components, or special builder's foil and foil tape, often with some of the soft innards ripped out, perhaps replaced by steel box springs and organic blankets. Many MCS patients are not lucky enough to afford adequate housing or medical care and live like refugees, driven out of their homes by building toxins and forced out of society by the toxins in daily products. They live in their cars, in wire cages, in tents, or in renovated trailers (homeless shelters are not fragrance and chemical free and thus inaccessible to people with MCS). The Environmental Health Coalition of Western Massachusetts did a survey and found that 57 percent of people with MCS had been homeless at some point since becoming sick. I don't know that there is any other population in America that rivals this level of homelessness, but the problem is not being addressed. A friend of mine, who finally found refuge in one of the few places with MCS acceptance, left me a tearful message the other day in which she said, "I am not living like a refugee – for the first time in my adult life." This friend was homeless for years due to MCS. A few lucky patients have eventually found the means (typically after many years of struggle and loss) to either renovate homes to MCS-safe standards (as I have done) or build nontoxic residences. However, people with MCS are still almost universally ostracized in their communities, and life with MCS is undeniably lonely. My PCA who has MCS mentioned to me yesterday that most of us with MCS have all been "labeled" in our small towns in Massachusetts. Hearing this made me so self-conscious. I'm not sure what kind of freak label I'm wearing where I live, because I'm so exiled from my community, but my interactions with the "outside" frequently remind me that my illness is barely being tolerated. I still feel fortunate that I have no neighbors within eyesight of my front door, as my last dwelling was a small city apartment and I got very ill from the wood smoke and laundry vent fumes from my neighbors. Some of my friends with MCS have lived with hostile neighbors who knowingly sprayed pesticides or other chemicals in their direction, sometimes with expressed intent to drive them out of their neighborhoods. These were, of course, violent acts of assault but law enforcement wouldn't do anything about it. Those of us with MCS have come to expect neighborhood hostility. We often try and create a land buffer from neighbors so they can't harm us, live close to other people with MCS, or to try and educate our neighbors so they won't turn against us. We have the rare disability designation of knowing our neighbors could possibly murder or recklessly endanger us and get away with it. Someone in the MCS network is always under fire. I serve on the advisory board of an MCS organization that frequently receives letters from people with MCS who are being driven out of their homes and neighborhoods and don't know what to do. The stories are heartbreaking, because nobody is offering enough funding to create real solutions (Brad Pitt – are you listening?). It is fair to say that Feudale-Bowes' neighbors are oozing with hostility in this article, although they keep reverting to the permitting argument. "Some neighbors question whether her ailment is genuine," reports the article. "But they and others say the main issue is the couple's disregard of the zoning rules." I hate to have to explain the ableist subtext here, but it's something like, "We don't believe that crazy lady is actually sick, so let's toss her out of her bubble and see if she vaporizes." Does this remind anyone of the Medieval ordeal known as "trial by drowning," in which women accused of witchcraft were thrown into a body of water to see if they would float – since witches were said to float -- and they would either sink to their deaths or be hanged or burned at the stake?  Feudale-Bowes does seem to have fairly severe MCS. She has to stay in her bubble 10 hours a day, even though she and her husband also own a Lustron house – a very sought after item in the MCS community. Lustron houses were built as wartime structures in the 1940s. They are made of prefabricated porcelain-enameled steel to go up quickly and last a long time, and steel and porcelain are often well tolerated by people with MCS. Most houses nowadays are built with wood (which, even in its pure forms, leeches terpines that MCS people often cannot tolerate), manufactured wood products (such as sheathing, which contains formaldehyde), tarred roofing, formaldehyde-laden cabinetry, toxic carpeting, vinyl-clad windows, and other products that outgas toxic chemicals into the living space, making them uninhabitable to people with MCS. Even houses built without these products, or older homes that have already outgased, contain many hazards for people with MCS: pesticides, gas appliances, cleaning products, etc. The fact that Feudale-Bowes cannot even live in a Lustron house and had to attach and accessory dwelling probably means her MCS is severe. Chemicals are likely, as she claims in this article, life-threatening to her. At the very least they cause her excruciating pain and other symptoms such as "migraines, joint pain, bladder inflammation, seizures and temporary paralysis." Dr. William Rea has written about MCS deaths caused by chemical exposures, typically involving organ failure. People with MCS know about and hear about such deaths, but the living typically keep a low profile: we don't want to be next. To say Feudale-Bowes is generally fearing for her life right now is, I'm sure, no understatement. Where else is she going to live? Winter is approaching, and it is not a good time to pitch a tent. What exactly is infuriating these neighbors so much? According to the article: Thomas Kelly, 53, who lives across the street, said that while he feels sorry for Feudale-Bowes, her husband "just did whatever he pleased."
"We don't live like that," he said. "We live in a society governed by laws."
But Feudale-Bowes said: "If I don't live like this, my pain level is so severe that I can't function, I can't live, I can't survive. It's excruciating."It seems to be something about lack of conformity, about the individual's inability to adapt to "a society governed by laws" that often requires sellers to spray pesticides around the perimeter of a structure to pass a housing inspection, or requires green builders to jump through hoops to build a straw bale house. There is another term for a lack of biological conformity: disability. And disability is what seems to be irking this guy. Feudale-Bowes' husband, Craig Bowes, said plainly, "My wife's not a lawn mower, and I didn't put up an illegal shed just to mess with the township." His statement says it all: if his wife was a lawn mower, the public outrage might make sense, but she is not a lawn mower: she is a human being with a life-threatening condition and nobody is providing a viable housing alternative. Moreover, and sadly, her neighbors know that she actually is, socially, a lawn mower: they can push her around with no recourse. Her threats to pursue this issue under the Americans With Disabilities Act will probably go nowhere, if prior MCS cases are any precedent. Until society decides that people with MCS are not lawn mowers, people with MCS will be treated like lawn mowers. Societies governed by laws are great unless those laws are, say, Jim Crow. Or Apartheid. Or other laws that categorically exclude some members of society. Has anyone asked Feudale-Bowes or her husband why they didn't obtain the necessary permits to put electricity and plumbing into her structure? I can wage a theory. In my personal experience, finding a contractor who won't infuse the walls of my house with fabric softener stench for days or weeks on end is extraordinarily difficult. Fabric softener alone, to a person with MCS, is like a nerve gas bomb set off on the house. The odor sticks to the walls and it takes a long time to air out the structure afterward to make it safe. Fragrance molecules are designed to be "sticky" and leave a residue. Anyone who has ever bought a used car with fourteen cardboard air freshener trees hanging from the rear view mirror knows what I am talking about. Or perhaps an easier analogy for most people is cigarette smoke: it does not dissipate when the smoker leaves the building. A smoker's house will always smell like smoke. Beyond the licensed contractor issue, there is the issue of finding people who understand the principles of MCS-safe renovation. There are only a handful of known experts in MCS-safe building around the country. Green builders are often open to hearing about MCS-safe renovation, but their priorities are slightly different from those of MCS-safe builders. For example, basic wiring can be a problem for people with MCS, who often suffer from electromagnetic sensitivities and need specialized wiring in their homes. Plumbers typically use toxic glues to seal their pipes that reeks for weeks or months on end, and aren't very willing to use alternative products. If a plumber simply does what he has been trained to do, or an electrician ignores specialized instructions, Feudale-Bowes could lose her safe structure, and the toxic damage might be impossible to remediate (plus, obviously, she can't stay in a hotel while some stinky contractor is stinking up her safe space). This is the basic reason why she probably had her husband install the pipes, or did it herself. She didn't want to get sicker or die. Housing accommodations are made all of the time for people with other disabilities. There is absolutely no reason why a judge cannot see this for the exceptional case of housing discrimination that it is. "For the wife's medical problems, there is sympathy," states Judge Carol McGinley. "For the owner's defiance of the township's lawful directives, there is no excuse." The judge is adopting quite a tone of condemnation against Craig Bowes: surely this guy should be run out on a rail for putting up a metal shed. I'm sure no dude in Pennsylvania has ever erected a shed without a permit! Meanwhile, I wonder what is happened to the local batterers in South Whitehall who are beating their disabled wives instead of helping them? Disabled women are at least twice as likely to be abused as non-disabled women, and their intimate relationships are often riddled with violence. Given that reality, and the social climate that cushions such violence against people with disabilities, perhaps Judge Carol could act neighborly and use her energy for a real cause, and crack down on the men in her community who use their hands for violence instead of salvation. Meanwhile, I hope the rest of us can do something to prevent this horror before another witch (i.e. extraordinary woman) drowns in a sea of social ignorance.
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September 1, 2008 - Monday
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 Mayor Ray Nagin reports that the "storm of the century," Hurricane Gustav, is bearing down on New Orleans. Are we better prepared this time? Time reports: "Stung by the images that flashed across the world, including the photo of an elderly woman dead in her wheelchair, her body covered with a blanket, officials promised to find a better way." I remember that image too – the wheelchair, of course, is what got me. Not only the wheelchair, but also the appalling lack of recognition of disability issues in the wake of Hurricane Katrina. I heard reporters talking about race and class and sidestepping the disability issue. I remember another image of a man with no legs on a rooftop. The newscast cut from that image to one of a reporter saying quizzically, "Why didn't some people leave?" The reporter, of course, drew no connection between those crazy stragglers and, say, the lack of legs. So what's the plan for Gustav? "This time, the city has taken steps to ensure no one has an excuse not to leave. The state has a $7 million contract to provide 700 buses to evacuate the elderly, the sick and anyone around the region without transportation," reports Time. Okay, well that appeases me slightly. They're going to consider the disabled this time? Great – give 'em "no excuse not to leave." But then the plan gets more bizarre. The shut-ins are apparently supposed to find their way to secret "pickup points" and not expect to be scooped up from their homes and beds. Not only that, but they are supposed to intuit the location of the "pickup points." "In New Orleans, the locations of the evacuation buses were not made public because people who need a ride are supposed to go to designated pickup points, not to the staging area." That's right: flex those arm muscles, Mr. No Legs: it's time to drag yourself to a "pickup point." Would it be too much to ask if there will be an accessible van to take some of the less fortunate hobblers to the pickup point? Can those who are bedridden at least be given a gurney with wheels and a push in the right direction? Apparently not. Resident Elouise Williams, 68, reported that she called the city's special 311 hotline number until she was "blue in the face," trying to figure out what to do, then decided to stay in the Algiers neighborhood to check on inhabitants who might not be able to get out. "My thing is, my fright is, if we have somebody in these houses and they're not able to get out, they're going to perish," she said, "And we had enough of that in Katrina." Why does Elouise seem to be the only person with any common sense? Maybe it's because people are so blinded to the realities of age and disability that they can't do anything but engage in bizarre victim-blaming and projections of personality attributions when the issue of disability or age comes up. AOL News reported yesterday that more than half of those who died in Hurricane Katrina were 75 or older. This is an appalling statistic. The article speculates why this might have been the case: "The results present a tragic portrait of elderly residents who may have thought the warnings were a false alarm, who feared that abandoning their homes would lead to looting, or who simply didn't want to leave their familiar surroundings for the unknown." Of all of the victims who died, 22 percent died in hospitals and 12 percent in nursing homes. So am I to believe that some woman hooked up to dialysis was having a phobia about looting and "the unknown?" And that some guy with a walker didn't get out because he didn't want to "leave his familiar surroundings?" Are we this far off from recognizing human frailty and the need for basic accommodation? CNN's coverage focused on those who "just won't leave" during this mandatory evacuation period, like those wacky restaurateurs who just can't stop selling bucketfuls of seafood as the Hurricane bears down. Oh, and also this disabled guy: "Across town in the 9th Ward, a neighborhood decimated by Katrina, Sidney William climbs slowly out of his truck. He's 49 but moves like he's 20 years older. 'My legs hurt; my feet hurt a lot,' he said. 'It's not easy.' William wants desperately to leave his native New Orleans to avoid Gustav. He didn't leave for Katrina because he didn't have the money. He won't talk about what happened to him during that storm. 'I wish I had the money to go.' Rejected for disability subsidies, he depends on his 23-year-old daughter, Gloria, to support the family." All of this feels a little too close to home for me, since I have spent much of my adult life fighting for disability accommodations and trying to get people to understand that there are some of us who can't go to "pickup points" or travel at will because of our disabilities. Of course the Americans With Disabilities Act only fights for "reasonable" accommodations for the disabled, and that word "reasonable" is a tremendous loophole. When basic human rights are not recognized, and people in nursing homes are given absolutely no way to escape the horror bearing down on them, they'll almost always – by some implication – be called unreasonable. They'll be called phobic about looters, or terrified of the unknown, or unable to recognize an alarm they have memorized over decades of living on the Gulf coast. I hope one day the media, the government, and the public decide that "reasonable" accommodation is accommodation that values human life enough to meet it on the doorstep.
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