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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New Advocates’ Letter to Secretary Kathleen Sebelius Regarding IOM Contract Open For Signatures

Discussion in 'Institute of Medicine (IOM) Government Contract' started by slayadragon, Dec 16, 2013.

  1. slayadragon

    slayadragon Senior Member


    This blog describes a new letter from ME/CFS advocates to be sent to Secretary Sebelius, once again asking that the IOM involvement be dropped and the Canadian Consensus Criteria be adopted as the definition for the disease.The same text will be on Jeannette Burmeister's blog, "Thoughts about M.E."Please consider signing!

    >We again request that the IOM contract be cancelled and that the government adopt the Canadian Consensus Criteria as the definition for this disease.

    >In addition, we request that the government increase the budget for biomedical research into this disease to become more equitable with the budgets for other diseases with a similar level of prevalence and severity. For instance, NIH spends more than 600 times as much on HIV/AIDS as it does on ME/CFS (with a 2014 budget of $3.1 billion for HIV/AIDS vs. a trivial $5 million for ME/CFS). Considering that the number of U.S. patients living with ME/CFS (1 million) is roughly the same as the number of people in this country living with HIV, and considering that the level of suffering endured by many ME/CFS patients is equal to that experienced by untreated AIDS patients prior to their deaths, ME/CFS is woefully underfunded. This needs to be rectified immediately.

    >Finally, we request that the government consistently refer to this disease by its proper name, Myalgic Encephalomyelitis (ME).
    justinreilly and Ren like this.
  2. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Just sent the following email:

    I would like to sign the new letter.

    Name Mr. Alex Young

    Degree, School Bachelor of Informatics, 1st Class Honours, Griffith University, Nathan, Queensland, Australia, 1992
    Bachelor of Science, University of Queensland, St. Lucia, Queensland, Australia, 2002.

    Former Job (age or year disabled) Partially disabled 1987, possibly sick from 1968 (undiagnosed). Last jobs: casual university lecturer and computer science tutor, 1995.

    Advocacy Position (or “Patient Advocate”) Patient Advocate, blogger.
    justinreilly, Ren and slayadragon like this.
  3. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    Great letter; signed up and sent out emails to other advocates.
    Nielk and alex3619 like this.
  4. Ember

    Ember Senior Member

    Have these advocates noticed that the Canadian Consensus Criteria is an ME/CFS definition?

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