Gender: Female
Age: 41
Sign: Sagittarius
Country: US
Signup Date: 6/1/2006
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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.
2:42 AM
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