Tag Archives: Myalgic Encephalomyelitis

P2P Review Protocol: Still No Transparency

Today, what seems to be the Systematic Review Protocol for the Pathways to Prevention (“P2P”) was published online.The secrecy continues: The publication does not include the names of the technical experts and NIH refused to divulge those names in response to … Continue reading

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Now You See It, Now You Don’t: HHS Covers Up Flawed IOM Contracting Procedure

In January of this year, I questioned the compliance of the IOM task order with the requirements of the NIH/NAS umbrella contract under which the task order was issued. I had found information on a website of the Office of … Continue reading

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IOM-OCI-OIG … OMG!

[Update: 2014/05/28, OIG Fails to Investigate IOM Conflict of Interest & Tells ME/CFS Patients to Buzz Off] The organizational conflict of interest (OCI) of the Institute of Medicine (IOM) in the ME/CFS case-definition study is as obvious as it gets. The IOM, … Continue reading

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IOM Meeting: Open? Participate At Your Own Risk

The third IOM meeting of the committee tasked with the development of a new case definition for ME/CFS will be held on May 5th and 6th, 2014. According to the IOM’s listserv message from yesterday, “[on the afternoon of May … Continue reading

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The IOMperor Has No Clothes: IOM Admits Lack of Expertise

Apparently, Kenneth Shine, former president of the Institute of Medicine (IOM) and chair of the IOM committee that was tasked by the VA with the development of a case definition for Gulf War Illness, had a gut feeling about the … Continue reading

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CFSAC Meeting December 2013: Webinar from Hell

There is no way to sugar coat this. The December 2013 CFSAC webinar was a colossal middle-finger salute to the patient community. Despite the webinar format having been a complete disaster in December, we will be treated to another CFSAC … Continue reading

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P2P: “Patients to Purgatory” or the Jury Model Stood on its Head

“They don’t know. They don’t know anything.”—Susan Maier about the P2P panel members On January 27, 2014, the Institute of Medicine (“IOM”) held its first out of five meetings relating to the development of diagnostic criteria for ME/CFS. It was … Continue reading

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Comments to the IOM by Edward Burmeister

My husband’s written comments for the January 27, 2014 IOM meeting: My name is Edward Burmeister.  I am an attorney with the world’s largest law firm.  My wife, Jeannette Burmeister, is also an attorney who worked at the same firm … Continue reading

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Want to Help in the IOM Fight? Sign This Petition!

Several patients and advocates will travel to D.C. to attend the January 27, 2014 IOM meeting, potentially the only IOM ME/CFS meeting that will be open to the public. This trip will come at great cost to folks, not only … Continue reading

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Does the IOM Task Order Comply with Requirements of NIH/NAS Umbrella Contract?

Remember, everybody, that HHS is refusing to comply with the FOIA requests from patients (which is why a lawsuit was filed in federal court to enforce rights under the FOIA)? Because of that, we don’t know for sure what the … Continue reading

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Federal Lawsuit Filed Against HHS and NIH Relating to IOM “Study”

I’m m mad as hell and I’m not going to take this anymore!—Movie “Network” (1976) Today, I filed a lawsuit against HHS and NIH in the U.S. District Court for the Northern District of California for failure to comply with … Continue reading

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IOM in Full Stealth Mode: No Information on Potentially Only Meeting Open to Public

The first IOM meeting to develop diagnostic criteria for “ME/CFS” is scheduled for the 27th and 28th of this month. The afternoon of the first day is open to the public and will include a public-comment period. So, what’s the … 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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Ampligen: The FDA’s Unequal Treatment of a Second-Class-Citizen Drug

On December 11, 2013, I wrote a letter to the FDA’s Director of the Center for Drug Evaluation and Research, Dr. Janet Woodcock. I pleaded with her to use her considerable discretion and potentially accelerated procedures regarding the approval of … Continue reading

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Dr. Woodcock: Please Approve Ampligen Now!

My letter to Dr. Woodcock from earlier this week: Jeannette K. Burmeister [email] [phone] [street]                                                                                                                  [street] [city, state, zip code]                                                                                       … Continue reading

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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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