Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Query regarding the CFSAC

Discussion in 'Action Alerts and Advocacy' started by Jill McLaughlin, Nov 14, 2011.

  1. Jill McLaughlin

    Jill McLaughlin *****

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    Dr. Lee,


    When will the public testimony from the November CFSAC meeting
    be put on the website?

    The CFSAC continues to use ME/CFS. They made recommendations
    but no changes have been accepted or approved. On whose authority does
    this committee become an ME/CFS committee or about ME/CFS, a made up
    term which has no HHS recognition or accepted case definition and is
    unrecognized by the WHO?

    The CFSAC is a "Chronic Fatigue Syndrome Advisory Committee."
    The objectives and scope pertains to issues related to CFS and
    operates under FACA guidelines. CDC recognizes and states
    the difference between ME and CFS and NCHS has classified them
    separately and in different Chapters of the ICD. The CFSAC
    recommendation in coding CFS to ME makes them synonymous
    terms and combines them, interfering with another illness and
    subjecting ME patients to inappropriate treatments associated with CFS.

    Jill McLaughlin


    cc:
    Dr. Howard Koh, Assistant Secretary for Health (ASH)
    Senator Sheldon Whitehouse
    Senator Jack Reed
    Congressman David Cicillini
    Vice President Joe Boden
    President Barak Obama
     

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