"First, Do No Pharma"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Actual greeting card sold in the 1990s

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

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

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

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

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

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

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

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

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

As Hillary Johnson wrote in "The Why":

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

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

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

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

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

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

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

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

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

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

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

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

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


Robin said…

I've had CFS for 15 years.

I tried all the woo the first three years, and then realized I was spending a small fortune on supplements and vitamins that were doing absolutely nothing to help me. CFS is just a much a brand to natural medicine peddlers as the CDC, because, imagine the loss of revenue in homeopathic remedies and supplements if thousands of people with a maligned, incurable disease actually get a treatment.

With nothing else available we resort to palliative measures. You make tinctures and juice, and take sleeping meds? Rock on. I do acupuncture and yoga, and I just got a flu shot. Maybe we'll both get a retroviral soon.

Things I hope:
- they drop "CFS" and name it after DeFreitas
- someday you get to see your grandma
- someday I get to see Paris with the man I love

Keep on keeping on.
Jerry said…
Great blog!

Tragically, CFS often is used as a "wastebasket diagnosis" by doctors who don't have adequate clinical guidelines. This is especially true now with Bill Reeves' "empirical definition" of CFS, which lacks specificity.

Kaspar Ezelius of Sweden has suggested that the disorder as now defined by the CDC for research purposes be named "Reeves Illness Melange" to distinguish it from the original CFS.
Peggy said…
- I think all of the cured patients should get to HAVE the city of Paris for a week.

- "Reeves Illness Melange" is genius. I will vote for it.
Diana said…
An excellent portrayal of the current situation and I thank you for not leaving out your gut reaction to it all.

"I will also let the XMRV research feed the first surge of hope I have felt in years."

This is my feeling too, as I sit here in yet another unwelcome relapse that I did not expect. I never expect them.

Thanks for reminding me why this matters to me so much. My memory is in bits and pieces after 20 years of illness.
Justin said…
This IS how wolves prey, by scattering the center.
Reeves does deserve an AdAge award for permeating our living rooms with nonsense.
Thanks for writing this.
brainfan said…
Hmm . . . Mike Adams and Big Pharma. One of the things that absolutely drives me nuts about having MCS is the fact that people construct these exclusionary dichotomies because they MUST choose one side over the other, i.e., because Big Pharma engages in deceitful practices to generate markets for their products, ALL pronouncements from Big Pharma are deceitful.

I fully recognize that if it weren't for Big Pharma and its business partnerships, I probably would not have MCS. However, I'm also aware that if it weren't for Big Pharma's Imitrex, I would have offed myself years ago.

Whether we're talking about politics, healthcare, science, or even sports, there isn't nearly enough objective critical thinking taking place out there from either side of any fence we care to straddle, and Mike Adams' shrill voice is unfortunately as bad as any other even if we do find that we share so many concerns.

Popular posts from this blog

How I Turned Up Missing