CFS Definition Petition Still Online

Discussion in 'Fibromyalgia Main Forum' started by Spinetti, Sep 21, 2009.

  1. Spinetti

    Spinetti New Member

    Posted 9/21/2009 on Co-Cure:

    I think there has been a lot of confusion - smokescreen - over what
    the so-called "empiric" or "new international" CDC definition of CFS is -

    So let me make this as clear as possible. Five months after patients
    pleaded at the CDC "stakeholder's" meeting that they change their
    direction on CFS, Bill Reeves and James Jones remain in charge and
    have altered nothing.

    Four months after the IACFS/ME joined patient advocacy organizations,
    patients, and experts in calling for an immediate change in the CDC's
    program for CFS, Bill Reeves and James Jones remain in charge and
    have altered nothing.

    CDC continues to use British psychiatrists and Emory University's
    Dept. of Psychiatry as their primary paid consulants on CFS, and Bill
    Reeves has a position as an associate clinical professor of
    psychiatry at Emory University.

    You have one day - right now - to sign a petition protesting the
    takeover of the CDC's definition of CFS by psychiatrists.

    That petition, created by Tom Kindlon of Ireland, is here: <> . Or

    If you haven't signed it, today Is the last chance. [NOTE: This is incorrect. The petition is still available online. See QuayMan's post below.]

    Sign it.

    Mary M. Schweitzer
    [This Message was Edited on 09/24/2009]
  2. QuayMan

    QuayMan Member

    Update #6 (September 22, 2009):

    I'm not sure why Mary S. gave the impression in a message that people only had one day to sign the petition. My intention hasn't changed. I think I will keep it open as long as the CDC continues to use the definition. I think it could be useful as a central point to find information on, and critiques of, this set of (flawed) criteria.

    ***Please*** post this update (i.e. update #6) anywhere you see a message saying that the petition is closing or has closed.

  3. AuntTammie

    AuntTammie New Member

    thanks for letting us know - I had wondered why it said last day....good to know it is still going to be there for others to read and hopefully sign
  4. mbofov

    mbofov Active Member

    I signed the petition.

  5. Spinetti

    Spinetti New Member

    The signature comments are interesting and explain what's wrong with the current CDC definition.

    Click the "signatures" tab to see them.
    [This Message was Edited on 09/24/2009]
  6. mezombie

    mezombie Member

    Please sign if you haven't already!
  7. AuntTammie

    AuntTammie New Member

  8. mezombie

    mezombie Member

  9. QuayMan

    QuayMan Member

  10. QuayMan

    QuayMan Member

    (From Co-Cure)

    The September 2009 edition of the free CFIDSLink e-newsletter, produced by
    the CFIDS Association of America, contained an article entitled, "Defining
    CFS: The Debate Goes On".

    This is on the study by Leonard Jason et al. published in the Journal of
    Disability Policy Studies which found that 38% of those subjects who had a
    diagnosis of major depressive disorder (MDD) were being misclassified as
    having CFS using the empiric criteria for CFS (Reeves, 2005).

    The article explains the study in fairly simple terms so might be an
    introduction to the problems with the criteria:
    [AOL: <a href="">Here</a>]

    Tom Kindlon
    Don't support the Reeves/empirical definition/criteria for CFS?
    Sign the petition at:
  11. QuayMan

    QuayMan Member

    (From Co-Cure)

    CDC empiric criteria 2005 - Protest against CDC using it

    Knowing that the petition against the CDC uses the CFS-Reeves-2005
    definition has been available since April 15, 2009, I am surprised that only
    around 1.700 have signed so far. The response from the international
    ME-community is lame. I would have expected around 17.000-170.000 instead of
    the few 1.700 signatures, knowing the worldwide number of people with ME.
    The petition text is simple "CDC CFS research should not involve the
    empirical definition (2005)", and I think nobody with ME could ever object
    to that. I wonder where all the US inhabitants with ME are? Why do so few
    sign? They should be very large in number - around a million.

    Petition: "CDC CFS research should not involve the empirical definition

    Only sign once!

    I think the petition is important, and will be like a "burial stone" for
    lost research into ME. A historical document how CDC changed its course, and
    how the whole world cried out loud. A remainder for future generations of ME
    patients, to know that their predecessors really did protest against the
    "burial" of CDC sponsored biomedical research into ME. I hope the petition
    will stay on the web for ever in order to be a monument over lost voices,
    and lost hope for patients worldwide hoping for a cure from their prison of
    invalidity in their life-time.

    /Kasper Ezelius, M.Sc., Örebro, Sweden, Northern Europe

    | ME-föreningen:
    | ME-information:


    Use the Canadian criteria 2003 for CFS in the USA. Kasper Ezelius. June 22,

    Resolution in order to make cohorts less heterogeneous. Kasper Ezelius. 1st
    of September 2008:

    How to categorize ME and CFS. Kasper Ezelius. 23 October 2008:

    CFS is no longer CFS, and it was never ME. Kasper Ezelius. 5 December 2008:
  12. skeptik2

    skeptik2 Member

    I tried to be #1700, but was too early by a couple,I think.

    I asked them to multiply the number of signatures by 10,000, to account
    for all the poor who don't have computers, and the too sick to even know
    what is happening in the CFS/ME universe.

    I sent it to all friends and family and asked them to sign it, too.

    SIGN IT, please....this is VERY IMPORTANT!

    Thank you,
  13. QuayMan

    QuayMan Member

  14. QuayMan

    QuayMan Member