Ember
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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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Why doesn’t the Whittemore Peterson Institute (WPI), Mt Sinai ME/CFS Center, Ben Natelson, Peterson’s Simarron Research Foundation, Klimas’ Nova Institute for Neuroimmune Medicine, the Chronic Fatigue Initiative, Kolgenick’s Open Medicine or the CAA, step up to the plate and substantiate Dr. Chia's work?
Chris Cairns (CFS Patient Advocate) asks:
Why doesn’t the Whittemore Peterson Institute (WPI), Mt Sinai ME/CFS Center, Ben Natelson, Peterson’s Simarron Research Foundation, Klimas’ Nova Institute for Neuroimmune Medicine, the Chronic Fatigue Initiative, Kolgenick’s Open Medicine or the CAA, step up to the plate and substantiate Dr. Chia's work?
My best guess is that it's a funding issue... We need to get an high level enterovirus researcher interested and on one of those teams.
Or Dr. Ian Lipkin? Chris writes, "The most likely person to pursue the enteroviral connection in ME/CFS is Ian Lipkin at Columbia. Lipkin has an inquisitive nature. I would be surprised if he is doing tissue biopsies, which seems the way to go."We need to get an high level enterovirus researcher interested and on one of those teams.
Is this what you're referring to?A lot of important research into ME was done before the invention of CFS.
“Myalgic encephalomyelitis – a persistent enteroviral infection?” (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2429637/pdf/postmedj00163-0031.pdf)M.E. is an infectious neurological disease and represents a major attack on the central nervous system (CNS) by the chronic effects of a viral infection. A significant number of the world’s leading M.E. experts believe that M.E., like poliomyelitis, is caused by an enterovirus. (This includes doctors such as A. Gilliam, A. Melvin Ramsay and Elizabeth Dowsett, John Richardson of Newcastle-upon-Tyne, W.H. Lyle, Elizabeth Bell of Ruckhill Hospital, James Mowbray of St Mary’s, Peter Behan and also the brilliant Byron Hyde of Canada.) The evidence which exists to support this theory is compelling.
A warning was sounded in 1989: S. Wessely, "Myalgic encephalomyelitis - a warning: discussion paper" (http://www.simonwessely.com/Downloads/Publications/CFS/2.pdf). Interesting read!Sadly, in the UK no one would finance this work and it dried up.
Professor James Mowbray at London’s St. Mary’s Hospital found evidence of persistent infection with enteroviruses in ME patients. He found that 51 per cent of a group of 87 patients had enterovirus antigens in their blood, a factor not found in the blood of normal people. When tested four months later 89 per cent were still positive. This confirmed earlier findings by Dr Peter Behan and colleagues who had found antibodies to a specific enterovirus, the Coxsackie B virus, in the blood of 35 out of 50 patients with the symptoms of ME. In the normal population only 4 percent, 2 in 50, are found to have Coxsackie B antibodies. They also found that 70 per cent of patients had impaired T-cell function, another marker of infection.
Yeah. Frankly, I would've preferred the $1m anon donation that Mt Sinai received be used on investigating enteroviruses rather than PEM.My best guess is that it's a funding issue. They have very limited funds, so they research what they can get funding for. They are most likely to get funding for research in the area of expertise of the principle investigators, which is not, at present, enteroviruses. We need to get an high level enterovirus researcher interested and on one of those teams.