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

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
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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

 

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.

 

https://twitter.com/user/status/1039975208361385986

 

https://twitter.com/user/status/1040667943439355904