Garbage In, Garbage Out (ME and CFS)

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jul 30, 2006.

  1. tansy

    tansy New Member

    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

    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 of the agency, both
    of which fully corroborated my own investigative reporting on the

    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 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 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. dononagin

    dononagin New Member

    Good article..

  3. foggyfroggy

    foggyfroggy Guest

    How to know what to believe??
    All we can do is hope that the independent researchers can make thier voices heard. The CDC will have to follow when the truth becomes obvious; and meanwhile we must stay informed and keep the hope.

  4. Cromwell

    Cromwell New Member

    I would wish you could add to your title something that will get people to Read this. It is an omportant article.

    TX for it.

    Thhis is so oftent he case when they research, I just read a new report on calcium/D combo and the CDC report had failed to mention that all the participants were already on a far higher dose than normal, and yet they dissed the idea of it being effective as they forgot that little detail.

    Also a largish number of people helping with research make up their symptoms as they get paid or they can be people who just want a lot of free tests. They really ought to get better documentation on who they are using(often it is prisoners many of whom are not exactly Jo average))

    Love Anne Cromwell
  5. mrdad

    mrdad New Member

    Maybe someone can help me here concerning that Tahoe Study
    Why am I thinking that that study had something to do with
    The YUPPIE Flue and Lyme disease?? Didn't they also find
    that young children were also victims of this malady? Fur-
    thermore, I thought they had found a similar link on the
    East coast upon doing the study. Confused. Clearification
    would be appreciated. THANKS!

  6. foggyfroggy

    foggyfroggy Guest

  7. ulala

    ulala New Member

    probably clear up many things for me.

    Some on this board are having success with anti-virals and others are having success with antibiotics.

    Can anyone give a nutshell of what Hillary Johnson attributes CFS to?