1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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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

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


    Queens, NY
    I just got my time slot to speak (over the phone) Wed, May 22 10:45 to 11:45 a.m.
    Valentijn, Sasha and snowathlete like this.
  3. Andrew

    Andrew Senior Member

    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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