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Monthly Archives: October 2013
66 ME/CFS Advocates Send Letter to Secretary Sebelius in Support of their Experts
Today, 66 ME/CFS advocates sent a letter to Department of Health and Human Services Secretary Kathleen Sebelius, joining 50 ME/CFS experts in calling for the adoption of the Canadian Consensus Criteria (CCC) as the definition of the disease as well … Continue reading
Posted in Uncategorized
Tagged Canadian Consensus Criteria, CCC, CFS, Chronic Fatigue Syndrome, Dr. Anthony Fauci, Dr. Francis Collins, Dr. Harold Varmus, Dr. Harvey Fineberg, Dr. Howard Koh, Dr. Margaret Hamburg, Dr. Richard Kronick, Dr. Thomas Frieden, Dr. Wanda Jones, HHS IOM Contract, IOM, ME, ME/CFS, ME/CFS Advocates, ME/CFS Experts, Ms. Carolyn W. Colvin, Ms. Marilyn Tavenner, Myalgic Encephalomyelitis, Secretary Sebelius, Senator Jerry Moran, Senator Tom Harkin
12 Comments
16 Additional ME/CFS Experts Added Signatures to Open CCC/IOM Letter to Sebelius
On September 23, 2013, thirty five ME/CFS experts sent an open letter to HHS Secretary Sebelius informing her that they have come to a consensus about the use of the Canadian Consensus Criteria (CCC) as the official disease definition and … Continue reading
New M.E. Documentary Needs Funding: “Canary in a Coal Mine”
“A film about life with M.E., the most prevalent and devastating disease your doctor has never heard of.” Please go to the Kickstarter page to donate to this important film project. From the film’s website, which has more information about … Continue reading
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
More Propaganda: Still no Explanation from CAA for Disagreeing with Experts and Patient Majority
Based on context and substance, we have to assume that the latest blog entry posted on the CFIDS Association of America’s (CAA) website was written by Suzanne Vernon although it was not signed and the author wasn’t identified. Suzanne Vernon … Continue reading
Posted in Uncategorized
Tagged CAA, CCC, CFIDS Association of America, CFS, Chronic Fatigue Syndrome, chronic multi-system illness, CMI, Compensation, Gulf War Illness, GWI, Institue of Medicine, IOM, Kim McCleary, ME, ME/CFS, Myalgic Encephalomyelitis, Salary, Secretary Sebelius, Suzanne Vernon
27 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
Thoughts About M.E. 
November 2013 CFSAC Meeting: 3 Weeks before Meeting, Information for Patients Still Outstanding
I sent the following email inquiring about the November 2013 CFSAC meeting, which is scheduled for November 12th and 13th, 2013, less than 3 weeks from now. I’d encourage other patients who have questions about the upcoming meeting to email … Continue reading →