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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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Collaborating with biomedical researchers and not supporting 'scientists' who still support the PACE trial would be a good start.AfME said:Asking how we can we collaborate more effectively to better meet the needs of people with M.E. at a local, national and international level
What are the ME Glamorgan org thinking of!
I didn't get a number due to my video feed freezing, but the rest is the same impression I got. Audio isn't great, so it can be hard to tell.
... that's just begging to have "bowel" strategically insertedComing up at 12:50 pm: Sonya Chowdhury talking about "Our global movement".
I think (poor audio - not sure) that Sonya said they had received a legacy that would allow them to have someone at the United Nations for a year, with support already offered by a cancer charity about how to advocate there.
.Sonia is saying that the ME/CFS International Alliance, which she says she instigated, is just an informal network/maight be a good idea/talking shop, sounds vague .....
But Sonia has already sent a letter to Dr Patricia Grady, Institute Director, National Institute of Nursing Research, letter by Sonya Chowdhury, CEO, Action for M.E., in the name of the M.E./CFS International Alliance, and listing the supposed membership Orgs ... a letter about about the Shorter lecture.
https://www.actionforme.org.uk/news/me/cfs-international-alliance-protests-shorter-lecture/
But Sonia was vague about the status of the supposed 'ME/CFS International Alliance'
Is the International Alliance a formal Org or not? One member, Jen Brea, says she has not formally signed up to such an alliance and was in the dark about being a member, and in hte dark about the letter sent in her organisations name (MEAction USA)
http://forums.phoenixrising.me/index.php?threads/new-org-me-cfs-international-alliance.47920/
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