Tag Archives: ME

Today’s Tweets: #NotAPersonalAttack

@Sebelius Irony: Disrespect by #HHS unifies #MECFS community more than ever. Many call for Dr. Lee’s resignation. #NotAPersonalAttack @HHS_DrKoh Irony: Disrespect by #HHS unifies #MECFS community more than ever. Many call for Dr. Lee’s resignation. #NotAPersonalAttack I am very sick … Continue reading

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My December 2013 Written Testimony

This includes parts I had to cut for the video testimony to stay within the 5 minutes. CFSAC Comments December 10-11, 2013 Jeannette Burmeister Attorney at Law My name is Jeannette Burmeister and I’d like to address the IOM contract. … Continue reading

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My December 2013 Video Testimony

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Email to Dr. Lee: Request to Cancel Today’s CFSAC Meeting

Dear Dr. Lee, Thank you for sending the updated agenda for today’s CFSAC meeting 1.5 hours before the start of the meeting. I take that to mean that the meeting will take place although the email did not expressly say … Continue reading

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CFSAC Meeting Needs to be Rescheduled as a Two Full Day In-Person Meeting

[Update: Please email Dr. Lee with copies to Sebelius, Koh and Jones requesting that the meeting be rescheduled as a two full-day, in-person meeting: Nancy.Lee@hhs.gov Kathleen.Sebelius@hhs.gov howard.koh@hhs.gov Wanda.Jones@hhs.gov] Even the weather gods don’t agree with HHS’s cowardly decision to hold … Continue reading

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Twilight Zone: IOM Committee Nominations Not Even in the Realm of Reasonableness

Today, the IOM published the provisional IOM committee appointments for the institution’s ME/CFS “study.” I have only taken a brief look at the list of nominees. Others are in the process of “vetting” the nominees and researching their background. I … 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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Call for the HHS Competition Advocate to Investigate the IOM Contract

I have sent today to the so-called “Competition Advocate” for HHS a request to investigate what appears to be a dramatic failure of HHS to follow applicable federal law and regulations regarding full and open competition in its award of … Continue reading

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The CFSAC Plot Thickens: A Tone-Deaf, Disrespectful State of Affairs

The next CFSAC meeting, which was supposed to be held earlier this month, but got postponed to December, brings with it so many changes that one has to wonder: Is this the beginning of the end for CFSAC, maybe not … 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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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

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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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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

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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

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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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