The Call for Opposition: Challenging the P2P and IOM Processes
In our second article on how to react to the publication of the draft P2P report, Gabby Klein provides her view of why she and a large group of advocates and patients are continuing their protest of the government’s ongoing control and manipulation of our disease via their processes...
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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!
     
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  2. Nielk

    Nielk

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    Queens, NY
    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.
     
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