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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Finally towards the end of the second half....One doctor said how come we can't stretch the funds for CFS, because we have XMRV which is huge. And Wanda jones said maybe in 6 months it wont be XMRV anymore it will be abcd...or something else. That comment has up set me. I felt it was a careless comment.
Wasn't that Dr. Hannah of the NIH...later, she gets really angry!
I was sitting here watching but my cell didn't ring. Too bad I can't afford a landline. There isn't a number to call into is there?
I did submit my comments in writing but they haven't been posted yet.
Edit: never mind!
I hope that the recommendation to add Christine Williams (the Director for Strategic partnerships at the Agency for Healthcare Research & Quality (AHRQ)) as an ex officio member is passed.
She offered her agency's help and resources a number of times today and Nancy Klimas remarked about her contributions during their working lunch. I hope we get to keep her.
Has the CFSAC ever had an ex officio member who was also a CFS patient?
Oh what a shame, Justin. So sorry. We were all looking forward to hearing you. You were getting big cheers in the Chat Room!
(((hugs)))
starry
Finally towards the end of the second half....One doctor said how come we can't stretch the funds for CFS, because we have XMRV which is huge. And Wanda jones said maybe in 6 months it wont be XMRV anymore it will be abcd...or something else. That comment has up set me. I felt it was a careless comment.
Finally towards the end of the second half....One doctor said how come we can't stretch the funds for CFS, because we have XMRV which is huge. And Wanda jones said maybe in 6 months it wont be XMRV anymore it will be abcd...or something else. That comment has up set me. I felt it was a careless comment.
I hope that the recommendation to add Christine Williams (the Director for Strategic partnerships at the Agency for Healthcare Research & Quality (AHRQ)) as an ex officio member is passed.