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Tag Archives: CCC
P2P FOIA Documents, Part 7—Collins, Murray and Maier: Trouble in NIH Paradise
David Murray’s (Director of NIH’s Office of Disease Prevention) noticing of a ProHealth blog entry started an avalanche of bizarre email exchanges within NIH that included, among others, Francis Collins, James Anderson and Larry Tabak. I received these emails after winning my … Continue reading
Posted in Uncategorized
Tagged Canadian Consensus Criteria, CCC, CFS, Chronic Fatigue Syndrome, David Murray, Francis Collins, Institute of Medicine, IOM, James Anderson, Larry Tabak, ME, ME/CFS, Myalgic Encephalomyelitis, Nancy Lee, NIH, P2P, Paris Watson, Pathways to Prevention, Susan Maier, Wilma Peterman Cross
50 Comments
P2P: Don’t Buy the Hype! Protest!
The reason why I will not cooperate with, or participate or engage in, the P2P process is very simple. HHS and NIH have shown time and time again that they do not have ME patients’ interest at heart. This disturbing … Continue reading
Posted in Uncategorized
Tagged Canadian Consensus Criteria, CCC, CFS, Chronic Fatigue Syndrome, FOIA, HHS, Jury Model, ME, Myalgic Encephalomyelitis, NIH, P2P, Protest
13 Comments
After OIG Dodges Charge of IOM’s Conflict of Interest, Meaningful Reply Demanded
[Updates: 2014/04/04: IOM-OCI-OIG … OMG! 2014/05/28: OIG Fails to Investigate IOM Conflict of Interest & Tells ME/CFS Patients to Buzz Off] I received a response from the Office of the Inspector General (OIG) to my request to investigate the IOM’s organizational conflict of interest (See … Continue reading
Posted in Uncategorized
Tagged Canadian Consensus Criteria, Case Defnition, CCC, CFS, CFSAC, Chronic Fatigue Syndrome, Daniel Levinson, Diagnostic Criteria, Dr. Nancy Lee, FAQs, FOIA, Gulf War Illness, GWI, HHS, Impaired Objectivity, Inspector General, Institute of Medicine, IOM, ME, Myalgic Encephalomyelitis, NAS, National Academy of Sciences, OCI, organizational conflict of interest, Secretary Sebelius
14 Comments
HHS and the IOM Saga: The Definition of Insanity and a Bad Case of Stockholm Syndrome
[I have borrowed somewhat from my prior blog posts and my legal complaints for this piece, but I’ve added on, so to speak, based on recent events and I thought it might be helpful to have all the arguments in … Continue reading
Posted in Uncategorized
Tagged Antidepressants, Canadian Consensus Criteria, CBT, CCC, CFS, CFSAC, CFSAC Recommendation October 2012, CFSAC webinar December 2013, Chronic Fatigue Syndrome, Chronic Multi-Symptom Illness, CMI, Competition Rules, Diagnostic Criteria, Dr. Byron Hyde, Dr. Gailen, Dr. Howard Koh, Dr. Mary Ann Fletcher, Dr. Nancy Lee, Eileen Holderman, Free speech, GET, Government Intimidation, Gulf War Illness, GWI, HHS, Institutional Conflict of Interest, IOM, IOM Study, ME, ME/CFS, Myalgic Encephalomyelitis, NIH, Personal Attacks, Secretary Sebelius, Steven Krafchick, Termination for Convenience
37 Comments
Overwhelming, Growing Support of ME Experts by Advocates in Opposition to IOM Contract: Advocates’ Open Letter Re-Sent With Additional Signatures
As was the case with the experts’ open letter to Secretary Sebelius—which was first published on September 23, 2013 and then updated on October 25, 2013—the October 28, 2013 advocates’ letter now has been updated with additional signatures and re-sent … Continue reading
Posted in Uncategorized
Tagged Canadian Consensus Criteria, CCC, CFS, Chronic Fatigue Syndrome, DHHS, HHS IOM Contract, IOM Contract, IOM Controversy, ME, ME/CFS, ME/CFS Advocates, ME/CFS Experts, ME/CFS Open Letter to Secretary Sebelius, Myalgic Encephalomyelitis, Open Advocates' Letter, Secretary Sebelius, Tweets, Twitter Campaign
19 Comments
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
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
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
ME Experts Agree on a Case Definition, Call Secretary Sebelius’ Bluff
Those of you who have followed the HHS’ CFSAC meetings know that Secretary Sebelius has, through Dr. Lee, CFSAC’s Designated Federal Official, told the patient community and CFSAC time and time again that HHS is not the proper institution to … Continue reading
Thoughts About M.E. 