Update from "Osler's Web" author

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Sep 15, 2006.

  1. mezombie

    mezombie Member

    This is the latest piece from Hillary Johnson, author of "Osler's Web", I've been able to find. I'm posting it for informational purposes only. It actually includes a good summary of her book.

    A message from Science - - Published E-Letter Responses For Kaiser, 312=20
    (5774) 669-671

    Jocelyn Kaiser
    Biomedicine: Genes and Chronic Fatigue: How Strong Is the Science?
    Science 2006; 312: 669-671

    Garbage In, Garbage Out
    Hillary J. Johnson 19 July 2006

    I applaud Science, and Jocelyn Kaiser, for refusing to take the Center for Disease Control's latest foray into elucidating chronic fatigue syndrome (CFS) at face value. In doing so, you distinguished your journal from most newspapers and wire services who covered the agency's press conference on the subject.

    I am the author of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Crown 1996), which first broke the story of the agency's fiscal malfeasance regarding CFS and launched two federal investigations the agency, both of which fully corroborated my own investigative reporting on the subject.

    The Atlanta agency's history with this disease has been much more destructive than the misuse of millions of dollars of Congressionally-earmarked money and the CDC’s subsequent lies to Congress, however. Things started to go terribly wrong when two inexperienced epidemiologists from CDC went to Lake Tahoe in 1987, two years after an outbreak of an unusual disease occurred there. With the publication of their first paper on the subject in 1988, which suggested that what they had newly named "chronic fatigue syndrome" was probably mass hysteria, the agency in effect declared war on those who suffer from this disease.

    Soon after, the CDC compounded the damage by issuing a wildly off-base "research definition" that defined the illness according to degrees of "fatigue." Fatigue, as the agency labels the profound exhaustion approaching paralysis that is characteristic of CFS, is only one symptom among many in this multi-system disease. In doing so, the agency set serious medical investigation back by 20 years.

    Still, in the successive two decades more than 2,000 peer-reviewed articles have been published in the medical literature documenting evidence for the biological basis for this disease, according to Harvard CFS expert Anthony Komaroff. The self-serving CDC, desperately trying to bolster its tarnished reputation in this field, conveniently turned this fact on its head by claiming its new gene study was the first evidence. Traditionally, and in this latest research, CDC avoids studying patients who actually have been diagnosed by clinicians with CFS on the absurd theory that these patients probably don't have the disease. The logic is reflective of the agency's powerful belief that only its epidemiologists know what the disease is or how to define it. In this case, they avoided looking to clinicians for patients but instead sought out study subjects in a random digit-dialing effort, identifying "patients" by their degree of fatigue. But, as clinical CFS specialists will tell you, fatigue alone is hardly a legitimate marker for CFS. Very likely, the patients included in this study either don't have CFS, or they have some extremely mild form of CFS, if such a thing even exists. Even excluding the scientific failures exhibited by CDC in its highly controversial research definition, there are other reasons to disregard this latest study. Simple logic dictates that people who have avoided seeking medical help for their condition are unlikely to suffer from a severe disease like CFS, one that has been shown in peer reviewed studies, again and again, to rival end-stage AIDS and severe congestive heart failure in its degree of morbidity.

    The likelihood that the CDC was even studying bona fide CFS sufferers is slim to none. As they used to say in the computer industry, GIGO -- garbage in, garbage out. Expect more of the same from the CDC where this disease is concerned.

  2. phoenixrising2

    phoenixrising2 New Member

    For the info!

  3. kholmes

    kholmes New Member

    Thanks for posting Hilary Johnson's latest.

    I think the CDC's study was good PR for us and is helping, though a bit ambivalently, to legitimize CFS as a physical illness. It's a lot better than what the CDC were saying about CFS in the 80s and 90s.

    But I think Johnson is absolutely right about the flaws in their study. She sure presents some sound arguments, doesn't she?

    The CDC's logic--at least up until recently--is right out of Catch-22; if you are referred by a doctor, or if your blood tests show evidence of any problems, it must not be CFS, because CFS is a psychological disorder!

    Kholmes (no relation to Gary Holmes of the CDC!)

    [This Message was Edited on 09/15/2006]
  4. Mikie

    Mikie Moderator

    For posting this. I've read most of the book and it is quite a work. Very complete history of CFIDS since the mid-80's Incline Village cluster outbreak.

    One good thing is that when an agency starts talking defective, or mutated, genes, people start to take the condition seriously.

    Love, Mikie
  5. kholmes

    kholmes New Member

    At least the CDC seems to be finally recognizing a physical basis for CFS.

    I sure hope the days of misappropriated funds and calling CFS a psychological disorder are ending.

    Many more doctors seem to at least be open to the idea that CFS is a physical problem.

    Another thing that encourages me is how many more people with CFS are winning long-term disability benefits from the SSA these days. In the 80s, that must have been next to impossible.

  6. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    all the way up from psychological, to stress related. I was furious when I read their study that stated we can't handle everyday life stressors like work, marriage, etc.

  7. sues1

    sues1 New Member

    Thanks for posting this. Her book is remarkable and I read this with much interest and even more repect for the author.

  8. Mikie

    Mikie Moderator

    But there is some research which may have some merit. Because of these defective genes, when a child is very small, any kind of stressor, whether it be abuse, illness, or injury, can make changes to the brain which turn it on to stress. It doesn't turn off when the stress is removed. Every kind of stress from then on sets off an alarm and the brain overreacts to it. It's a physical response to a perceived psychological stressor.

    As long as no one is saying our illnesses are all in our minds, due solely to depression, or due solely to stress, I'm open to their findings. I think it is likely that PTSD in soldiers can trigger the same thing in those who are predisposed. Add the vaccinations and toxins in a war areana, and you have a recipe for physical, mental, and emotional illness. That the govt. often turns a deaf ear to their plight is heart breaking.

    Love, Mikie

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