Welcome to Phoenix Rising!
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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bob did great in his testimony, and in it he says 1500+ emails have been sent. that does not include faxes and calls. WE ARE GOING STRONG AND DOING GREAT!
What amazed me about today was the fact that we were all kept so busy! I've never seen a CFSAC meeting like today's. They trotted out all of these nice speakers, many who had nothing to offer us at all, and just kept talking about all these "other" things completely redirecting attention from the issue of XMRV. (head shake)
So the question that I have to ask, is this an attempt to bury the research? I mean what is the point of ignoring the XMRV question so completely? If we just pretend the elephant isn't in the room will that make it disappear? This is "our" advisory committee, they have our interest at heart why all the pretending??? In the desperate attempts to buy time today would, get either get top ranking or bottom ranking I'm not sure which, as just plain crazy.