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CFSAC charter has not been renewed. Solve, #MEAction and Occupy ME all call for action.

Discussion in 'Advocacy Action Alerts' started by Medfeb, Sep 6, 2018.

  1. MeSci

    MeSci Senior Member (Voting Rights)

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    Cornwall, UK
    Merged thread

    Source: Occupy M.E.

    Date: September 7, 2018

    Author Jennie Spotila

    URL: http://occupyme.net/2018/09/07/rest-in-power-cfsac/

    Rem: This is the updated version

    Rest In Power, CFSAC

    The Chronic Fatigue Syndrome Advisory Committee (CFSAC) is dead. Both the website and the email listserv made the announcement on September 6th: 'The charter for the Chronic Fatigue Syndrome Advisory Committee expired on September 5, 2018.'

    A sudden death under unusual circumstances necessitates an autopsy.

    One of the major aspects of my advocacy career has been CFSAC-watch. I believe that the end of CFSAC is a significant blow to the ME community, but I also know that we can overcome this damage. I have many more words to say, but in this post I will address:

    * Who knew the charter was at risk
    * Why the committee may have been killed
    * Why this matters
    * What happens next
    * Statements from nine twelve committee members (voting/non-voting)
    (updated September 7th at 6pm)

    More at link
    Last edited by a moderator: Sep 8, 2018
    Graham, MEMarge, rvallee and 10 others like this.
  2. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Stanford, CA
    Please do read the article re: why CFSAC was important to all of us. It was often a source of frustration for patients, but it was also the site of many hardworking subgroups that were getting it done, and a rare site of opportunity for inter-agency cooperation.
  3. Roy S

    Roy S Senior Member (Voting Rights)

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  4. Roy S

    Roy S Senior Member (Voting Rights)

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