Jen Brea launches mass-advocacy platform — #MEAction goes live!
Jen Brea is a phenomenon. After working as a freelance writer in China and Africa, she enrolled for a PhD at Harvard in political science but, four years ago, got sick. She had a fever that lasted ten days.
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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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    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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