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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.

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  1. MeSci

    MeSci Senior Member (Voting Rights)

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    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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    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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