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ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
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Dr Bell's 25-year follow-up on Lyndonville Outbreak patients
Wednesday 1 June 2011
TWO OF THE MOST INTERESTING AND INFORMATIVE ME/CFS VIDEOS WE’VE SEEN are now offered free online by the Massachusetts CFIDS/ME & FM Association – a record of the April 16 event they sponsored in Boston. The videos are:
1. Dr. David Bell’s Hour-Long Presentation, “25 Year Follow-up on Chronic Fatigue Syndrome: Rising Incapacity.” Go to http://www.masscfids.org/resource-library/3/309. (Allow the video ample time to download.)
Dr. Bell discusses trends in the health of the mid-‘80s Lyndonville Outbreak patients (then youngsters) as they enter their 40’s, and his theories about what may be happening. Some people remain disabled, some got well, some improved to various extents, and some of the latter are less well as they age. He’s never identified any factor that might differentiate the recovered patients from the others, except less severe onset in some. He theorizes that 'fibromyalgia' is a term that people use when they’re able to be up and around, but their pain is considerable.
2. Dr. Bell’s 45-Minute Audience Q&A. Go to http://www.masscfids.org/resource-library/3/309. He expounds on XMRV research, retroviruses, different protocols, post exertional malaise, exercise, the ongoing Myhill/Booth/McLaren-Howard mitochondrial work & tests, and many other questions most patients wonder about. He’s convinced there is something that causes this illness, and is optimistic that the mystery will be solved by top scientists working on it “quietly.”
Do any treatments make a difference? Dr. Bell still believes daily high dose B-12 taken indefinitely is worthwhile for many, possibly because as a major antioxidant it aggressively sops up free radicals, which he believes are a major factor in the illness. Roughly 30% to 40% of patients seem to improve on this regimen (meaning at least a 20% improvement). What about Provigil (modafinil), a narcolepsy drug? Some people do better on it, but don't think about it if you're not one of those who "feel better drinking a pot of coffee."
TEXT TRANSCRIPTS OF THE VIDEOS will be posted soon on the Massachusetts CFIDS & FM Association website.
Our sincere thanks to the Massachusetts CFIDS/ME & FM Association for posting this very high-quality video coverage of their April 16 event.
The above originally appeared here.
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