Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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197 Professionals and Advocates Send New Letter to Sebelius

Discussion in 'Institute of Medicine (IOM) Government Contract' started by slayadragon, Jan 2, 2014.

  1. slayadragon

    slayadragon Senior Member

    A new letter dated December 26, 2013, has been sent to Secretary Kathleen Sebeliius regarding the government's attempts to re-define ME/CFS.

    >This letter repeats the request from the previous letter from experts and from the previous letter from advocates that the Department of Health and Human Services (HHS) adopt the Canadian Consensus Criteria (CCC) for the disease, rather than having the Institute of Medicine (IOM) develop a new definition.

    >The letter also states specific objections to the provisional slate of committee members announced to the public by IOM; asks for an increase in government funding for biomedical research into the disease; and requests that the government consistently call the disease by its proper name, Myalgic Encephalomyelitis (ME).

    >The signers of this new letter include fourteen of the individuals who signed the “experts’ letter” as well as the majority of those who signed the “advocates’ letter.”

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