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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CFSAC Spring 2013 (May 22-23): How to Participate

Discussion in 'Phoenix Rising Articles' started by Mark, May 8, 2013.

  1. jspotila

    jspotila Senior Member

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    I will, over the phone. Thanks for submitting written testimony!
     
    Nielk likes this.
  2. Nielk

    Nielk

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    I just got my time slot to speak (over the phone) Wed, May 22 10:45 to 11:45 a.m.
     
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  3. Andrew

    Andrew Senior Member

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    Los Angeles, USA
    1. I think the toolkit should be removed. And I think it is a good issue to hit again and again. It sends a message about how upset we are about what they offer. Also, the CDC is not going to revise it in a way that is fair, even if they have the resources.

    2. I think another possibility to push for is the DHHS (including the CDC) to informally adopting the use of the term Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    BTW, I doubt that many would agree with me, but given a choice, I'd like to see the CDC remove every reference on their website to ME/CFS. Because as far as I'm concerned, the current website is worse than nothing.
     
    Valentijn and Nielk like this.

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