Tag Archives: Secretary Sebelius

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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Sebelius “Responds” to the Experts: “You Mean This Is Not What You Wanted?”

On November 12, 2013—as I found out just yesterday—more than seven weeks after the original open expert letter was sent to her, Secretary Sebelius finally provided a brief “response” mirroring the talking point provided in the FAQs of November 15, … Continue reading

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Supplemental Request for Investigation by OIG: Did DHHS Violate its No-Bid-Contract Requirements for IOM Contract?

[Updates: 2014/01/08: After OIG Dodges Charge of IOM’s Conflict of Interest, Meaningful Reply Demanded 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] Today, I supplemented my request for investigation by the … Continue reading

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Call for Investigation by the Inspector General of the IOM’s Conflict of Interest With Respect to ME/CFS

[Updates: 2013/11/17: Supplemental Request for Investigation by OIG: Did DHHS Violate its No-Bid-Contract Requirements for IOM Contract? 2014/01/08: After OIG Dodges Charge of IOM’s Conflict of Interest, Meaningful Reply Demanded 2014/04/04: IOM-OCI-OIG … OMG! 2014/05/28: OIG Fails to Investigate IOM Conflict of Interest & … 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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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

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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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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

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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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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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