Cort
Phoenix Rising Founder
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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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Yes, i think the name change is quite a big thing. I have to get used to it too, i'm still always writing CFS If the NIH are writing Myalgic Encephalomyelitis / Chronic Fatigue Syndrome that means something, i think.Well at least they are renaming the illness. Here in America ME has more gas than CFS!
The logos look to me like the institutes at NIH. This is not a State of the Science conference in the technical sense. Those conferences begin with a review of the data by AHRQ, which normally takes about a year. It has been confirmed to at least two people that I am aware of that AHRQ was not asked to do the data review. No AHRQ review = no state of the science conference by those standard procedures.
Yes, i think the name change is quite a big thing. I have to get used to it too, i'm still always writing CFS If the NIH are writing Myalgic Encephalomyelitis / Chronic Fatigue Syndrome that means something, i think.
This IS a conference, but because the panelists will actually have to "work", it is technically a workshop. This will not be a passive listening session... the panelists will be involved in discussion, deliberation and debate about the current state of the science.
Any information on whom the panelists will be? Just wondering if it will be mostly NIH and CDC peeps hogging the show. I must confess that it is exciting to see more focus on ME/CFS and XMRV.
I still however find myself very concerned that this might just be a far more elaborate dog and pony show then the one the NIH and CDC put on years ago. Since that one resulted in ME/CFS to be considered by most to be of the mind reflecting in our physical bodies.