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Tag Archives: CFSAC
Charter Changes
It came down to the wire, but HHS Secretary Sylvia Burwell has renewed the charter of the CFS Advisory Committee. While there are no sweeping changes to the charter, some of the changes may have you scratching your head. CFSAC … Continue reading
Posted in Advocacy
Tagged CFSAC, DHHS, government, politics, recommendations, speaking out
Comments Off on Charter Changes
Turnover
Multiple sources have confirmed that Dr. Nancy Lee is stepping down as Designated Federal Officer of the CFS Advisory Committee. Also departing is her assistant DFO, Marty Bond. Dr. Lee was a lightning rod for criticism and controversy. During her … Continue reading
Renewal?
Will the CFS Advisory Committee be back this fall? Not many people seem to be paying attention to the fact that it could potentially disappear. The CFSAC is a chartered federal advisory committee, and by law it must be renewed … Continue reading
Guest Post: CFSAC Testimony of Andrew Bokelman
Andrew Bokelman was scheduled to deliver public comment to the CFS Advisory Committee on June 17th and was the first telephone commenter. His call was terminated by the operator prior to his 3 minutes being up. After protest on Andrew’s … Continue reading
Posted in Advocacy
Tagged case definition, CDC, CFSAC, DHHS, government, IOM, politics, speaking out, testimony
5 Comments
Guest Post: CFSAC Comments of Charmian Proskauer
Charmian delivered these comments at today’s CFS Advisory Committee meeting. She has kindly given me permission to publish them here in their entirety. My name is Charmian Proskauer, and I currently serve as President of the Massachusetts CFIDS/ME & FM … Continue reading
Posted in Advocacy
Tagged action, case definition, CFSAC, DHHS, government, IOM, living with, occupy, P2P, politics, recommendations, speaking out, testimony
1 Comment
Comment for the June 2014 CFS Advisory Committee
These are the comments I delivered by telephone to the CFS Advisory Committee today. For the record, the operator told me that they were instructed to cut people off precisely at 3 minutes. Mary Dimmock and I wrote to Dr. … Continue reading
Posted in Advocacy
Tagged action, CFSAC, DHHS, government, NIH, occupy, P2P, politics, recommendations, speaking out, testimony
2 Comments
Guest Post: CFSAC Comments of Joe Landson
Joe Landson delivered these comments at the CFS Advisory Committee meeting today. He has kindly given me permission to post them in their entirety here. Testimony of Joseph D. Landson June 2014 Chronic Fatigue Syndrome Advisory Committee First, credit where … Continue reading
Posted in Advocacy
Tagged action, case definition, CFSAC, DHHS, government, NIH, occupy, P2P, politics, recommendations, speaking out, testimony
6 Comments
P2P Spin
Listen carefully to the agency updates at the June 16th CFS Advisory Committee meeting. Updates on the P2P Workshop and systematic evidence review may sound reasonable, but I suspect that hidden within will be some spin-doctoring to deflect our concerns … Continue reading
Posted in Advocacy
Tagged action, case definition, CFSAC, DHHS, government, NIH, occupy, P2P, politics, priorities, researchers, speaking out
14 Comments
Just In: New CFSAC Members
New CFSAC members have been announced! Four members have been appointed, along with the announcement of the new chair. Two members are not new to us, or to CFSAC. Dr. Sue Levine and Dr. Dane Cook have both been given … Continue reading
Posted in Advocacy
Tagged CFSAC, DHHS, government, politics, priorities, recommendations, researchers, speaking out
11 Comments
Parsing CFSAC
I feel like a broken record, saying that the June 16-17th CFS Advisory Committee meeting was frustrating. This meeting struck me as a tangle of threads that can only be understood by teasing them apart. There were signals buried in … Continue reading →