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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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I think anyone with a copy of Osler's Web should mail their copy to the above list of people to make a statment!!! I plan on sending mine. Where can I find their address? Thanks.
@Cort- on the excellent twiv podcast with Tuller, Racienello said he expected the XMRV studies to come thru one of the two virology panels (there are 7 more for HIV) and he's on one of them. do they go to the "CFS" one or to a virology one. if they go to a 'cfs' one, i think we should probably try to get them re-routed to virology because there does seem to be a competence for virology on the 'cfs' sep. What do you think? anyone else want to comment?
I just sent the following edited version of the letter so helpfully posted above. My changes were just to keep it as focused and as easy for a harried staffer to absorb as possible. I post it here in case anyone wants to send it or a version of it.....
To my informed understanding, researchers with the expertise to serve on the "CFS" SEP include: Leonard Jason, Ila Singh, Anthony Komaroff, Daniel Peterson, Paul Cheney, Frank Ruscetti, Sandra Ruscetti, David Bell, Susan Levine, Joseph Burrascano, Eric Klein, Judy Mikovits, Robert Silverman, Charles Lapp, Peter Rowe, Martin Lerner, David Streeten, Dharam Ablashi, Harvey Alter, Shyh-Ching Lo, David Strayer, Paul Levine, Robert Suhadolnik, Fred Friedberg, Donnica Moore, Lucinda Bateman, Sam Chow, Alan Light, Kathleen Light, Martin Pall, Rich van Konynenburg.....