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Tag Archives: HHS
Inquiring Minds Want to Know: Who is Behind the IOM FAQs?
Today, somewhat mysterious—and maybe (based on the quality and the formatting) hastily drafted—FAQs regarding the IOM contract (“FAQs”) appeared on the Internet. I say mysterious because the authorship of these FAQs is unclear. Is this statement an official pronouncement of … Continue reading
Posted in Uncategorized
Tagged CAA, CFIDS, CFS, CFSAC, CFSAC Charter, CFSAC listserv, Chronic Fatigue Syndrome, Conflict of Interest, Daniel Levinson, Dr. Kenneth Shine, FAQs, HHS, Inspector General, IOM Contract, Kate Meck, ME, ME/CFS, ME/CFS Diagnostic Criteria, Myalgic Encephalomyelitis, PANDORA, Request to Investigate Conflict of Interest, Sebelius, Termination for Convenience
6 Comments
Principled Approach: Fighting the IOM Contract is a Moral Imperative
“If patient advocates sit on the committee, they will be played. The government will then be able to say the patient sector was represented in the committee’s actions and the outcome of the work.”—John Herd, veteran patient advocate, October 10, … Continue reading
Posted in Uncategorized
Tagged Canadian Consensus Criteria, CCC, CFS, Chronic Fatigue Syndrome, HHS, IOM Contract, ME, ME/CFS, Myalgic Encephalomyelitis, Secretary Sebelius
31 Comments
Please Sign Petition: Thank You to Our ME Experts
Link to Petition: http://www.thepetitionsite.com/898/238/310/thank-you-to-mecfs-experts/ Our experts have taken a brave and trailblazing stand for ME patients by agreeing, in an open letter to Secretary Sebelius, on an official definition for “ME/CFS,” the Canadian Consensus Criteria (CCC). This is what Secretary Sebelius has … Continue reading
Spinning Around-CAA Putting Political Spin on the IOM
“A “spin room” …. is an area in which reporters can speak with debate participants and/or their representatives after a debate. The name refers to the fact that the participants will attempt to “spin” or influence the perception of the … Continue reading
Posted in Uncategorized
Tagged CAA, CCC, CFIDS Association of America, CFS, Chronic Fatigue Syndrome, chronic multi-system illness, CMI, Dr. Bateman, Fred Friedberg, Gulf War Illness, GWI, HHS, HHS IOM Contract, IACFS/ME, IOM Contract, ME, ME/CFS, Myalgic Encephalomyelitis, Secretary Sebelius, SEP, Special Emphasis Panel, Spin Room, Suzanne Vernon
26 Comments
Perfect is the Enemy of Good
[Disclaimer: I am not in very good shape and I do not, at the moment, have the stamina some other advocates do. But the recent developments are so monumental that I felt I nevertheless should give my impressions as best … Continue reading
CFIDS Association Asking Signatories to Withdraw Endorsement of CCC
I know this for a fact, but can’t disclose my source: The CFIDS Association of America (“CAA”) has contacted at least some, maybe all, of the 35 signatories of the letter addressed to the HHS regarding the adoption of the … Continue reading
Thoughts About M.E. 