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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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Any chance you could do a bit of this investigative journalism on Simon Wessley's "outside" interests ?
Well done Parvo have a nice long WELL DESERVED rest now
as for
And that Sudlow gal does look a bit fishy!! Something is not right.... can't put my finger on it... maybe her being a Welcome Trust scientist, and being so heavily into 'genetic causes' of stroke (I don't know why but that one does ring little alarm bells for me)... and what with the Welcome Trust investing so heavily in Institute of Psychiatry... Are they involved in insurance side of health business at all? What about their recent merger with who was it again, GSK?
Absolutely brilliant Parvo!
Thank you Thank you.
Have a good :In bed:
they are heavily into psychiatric drugs the wellcome foundation is owned by glaxo smith kline this lady is employed by a drug company
My question is about this point; the attempt to Minimalize the risk of including patients with delayed convalescence of a viral infection.
To do this they required that the symptoms be present for at least a year. So wouldn't that be good, in that it would allow for chronic viral infection (herpes, EBV, XMRV) , but rule out a transient viral infection (flu, cold)?
“Well characterized” somberly implies that the patients studied were robustly and meaningfully comparable to those in the landmark Science XMRV study. Namely: Canadian/Fukuda Criteria Chronic Fatigue Syndrome patients with severe disability, reproducible immune abnormalities, cognitive deficits, prolonged, disabling fatigue, low V02 max, and multiple longitudinal measurements of clinical and laboratory abnormalities (http://www.sciencemag.org/cgi/content/full/1179052/DC1 ).
Of note was the last sentence: “These inclusion and exclusion procedures resulted in a study sample of 298 subjects.”
395 self-referred patients
Patients with definite or suspected illnesses causing fatigue excluded
Patients taking heart meds excluded – i.e. many advanced ME/CFS patients excluded
Final study sample of 298
Gerwyn on the PR Forums was audacious enough to question the self-referral and telephone diagnosis process. Surely this was on par with the Science patient cohort procedures!
Gerwyn on the PR Forums was audacious enough to question the self-referral and telephone diagnosis process