Category Archives: Uncategorized

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

Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , , , | 25 Comments

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

Posted in Uncategorized | Tagged , , , , , , , , , , , , , , | 13 Comments

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

Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , , | 58 Comments

Who is Causing Facebook to Block Tuller’s Article?

On Monday, January 27, 2014, David Tuller published, on Buzzfeed, a well-researched and factual article—”How “Chronic Fatigue Syndrome” Obscures A Serious Illness“—on ME/CFS and the government’s efforts to redefine the disease. As of right now, 78,331 people have viewed the article. … Continue reading

Posted in Uncategorized | Tagged , , , , | 75 Comments

Jeannette Burmeister’s IOM-Meeting Comments

IOM Meeting January 27, 2014 In-Person Comments by Jeannette Burmeister Hello.  I’m Jeannette Burmeister and I’m an attorney. I’ve heard some people at HHS are confused about patients’ deeply-felt opposition to your project.  Let me explain in simple terms why: … Continue reading

Posted in Uncategorized | Tagged , , , , , , , , , | 19 Comments

David Tuller on the IOM Saga: Must Read

David Tuller just published an excellent piece on the IOM saga on Buzzfeed, just in time before the IOM meeting today. Please, everybody, help to have it go viral. Tweet about it and put in on your FB wall, ideally … Continue reading

Posted in Uncategorized | Tagged , , | 12 Comments

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

Posted in Uncategorized | Tagged , , , , , , , , , | 16 Comments

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

Posted in Uncategorized | Tagged , , , , , , , , | 11 Comments

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

Posted in Uncategorized | Tagged , , , , , , , , , , | 21 Comments

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

Posted in Uncategorized | Tagged , , , , , , , , , , , | 107 Comments

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

Posted in Uncategorized | Tagged , , , , , , , , , , | 18 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 , , , , , , , , , , , , , , , , , , , , , , , , | 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 , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 36 Comments

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

Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , | 8 Comments

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

Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 12 Comments

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

Posted in Uncategorized | Tagged , , , , , , , , , | 8 Comments

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

Posted in Uncategorized | Tagged , , , , , , , , | 4 Comments

My December 2013 Video Testimony

Posted in Uncategorized | Tagged , , , , , , , | 9 Comments

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

Posted in Uncategorized | Tagged , , , , , , | 3 Comments

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

Posted in Uncategorized | Tagged , , , , , , , , , , , , , , | 29 Comments