ABC Special on ME/CFS from 1996!

Discussion in 'Fibromyalgia Main Forum' started by KnightofZero, Jul 14, 2010.

  1. KnightofZero

    KnightofZero New Member

    CFS: "Primetime" on ABC in 1996:

    http://www.youtube.com/watch?v=sjVsSbmiTZg


    This may make you somewhat angry. Here is a little summary of similarities from now and then. Obviously we are better off now than in 1996 but it really is surprising that so many things have stayed the same.

    How things were in 1996:

    1.) CDC thought the patients were "hysterical."
    2.) Ampligen was the "hot" new drug.
    3.) Ampligen was not approved by FDA.
    4.) Osler's Web came out.
    5.) The idea of retroviral causation is considered to be a likely hypothesis (Dr. Phil Lee, Assistant Sec of Health, DHHS).
    6.) Lack of blood-flow to the brain is considered by many non-government researchers and clinicians to be a serious factor. [http://www.ahmf.org/forgetmenot.html; Dr. Byron Hyde's Book The Clinical and Scientific Basis of ME]
    7.) An accurate consensus definition for research is considered a problem that needs to be solved.


    How things are in 2010:

    1.) CDC thinks patients are due to "child-hood trauma", "stress-intolerance," and "metabolic syndrome." ("metabolic syndrome" is obesity, plus *high* blood pressure, plus some abnormalities in fatty acid lab work)
    2.) Ampligen is the "hot" new drug.
    3.) Ampligen is not approved by FDA.
    4.) The idea of retroviral causation is considered to be a *very* likely, the leading, hypothesis.
    5.) Lack of blood-flow to the brain is considered by many non-government researchers and clinicians to be a serious factor.
    6.) A Consensus research definition is considered a problem that needs to be solved. Out of those published in scientific journals the last fifteen years or so, the definition accepted to be most accurate, the Canadian Clinical, is very rarely used.

    ******************************************************************

    That is, if you dis-include the studies on gene expression and the XMRV discovery the majority of what has happened over the last fifteen or so years is the expanding upon (to greater or lesser degree) discoveries already known. Not much progress.

    We need more, more vigorous biomedical research, more money (the NIH spends about as much as about three "happy meals" per CFS patient per annum), much much more!



    (reposted with permission)
  2. KnightofZero

    KnightofZero New Member

    I agree totally. We need the positive paper to be published and let science play out. And we need more research $ immediately for XMRV & CFS biomedical research more generally and the "Centers of Excellence" model that everyone has spoke about for years.

    I think once our policy makers see a lot of detailed and cogent requests for steps like these they will be willing to move forward. For one, we can lobby for the CFSAC to actually have power to enforce its recommendations...

    ...And if anything we need to try and get things the centers for excellence and independent medical centers (PANDORA comes to mind) more to the forefront and get the CDC out of CFS research --they are a lost cause.

    For a politician what could possibly be a better risk/reward than looking like a white knight by helping a lot of suffering patients? Especially when it is indisputably necessary.