Tag Archives: Canadian Consensus Criteria

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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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