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Author Archives: Jeannette Burmeister
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 Byron Hyde, CFS, Chronic Fatigue Syndrome, Chronic Multisymptom Illness, Chronic Multisymptom Illness [CMI] in Gulf War Veterans: Case Definitions Reexamined, CMI, Guf War Illness, GWI, HHS, Institute of Medicine, IOM, Jim Binns, Kenneth Shine, ME, ME/CFS, Myalgic Encephalomyelitis, Research Advisory Committee on Gulf War Veterans' Illnesses, Simon Wessely, VA
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
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 Albert Einstein, CFS, Chronic Fatigue Syndrome, Clarence Darrow, Institue of Medicine, IOM Meeting, January 27 2014, Jury Model, ME, ME/CFS, Myalgic Encephalomyelitis, NIH, OHSU, Oregon Health and Science University, P2P, Pathways to Prevention, Susan Maier, Task Order
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
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
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
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 CFS, Chronic Fatigue Syndrome, HHS, IOM, January 27th 2014, ME, ME/CFS, Myalgic Encephalomyelitis, Petition
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 CFS, Chronic Fatigue Syndrome, Institute of Medicine, ME, ME/CFS, Myalgic Encephalomyelitis, NAS, NIH, Scope, Task Order, Umbrella Contract
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
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
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 Canadian Consensus Criteria, Case Defnition, CCC, CFS, CFSAC, Chronic Fatigue Syndrome, Daniel Levinson, Diagnostic Criteria, Dr. Nancy Lee, FAQs, FOIA, Gulf War Illness, GWI, HHS, Impaired Objectivity, Inspector General, Institute of Medicine, IOM, ME, Myalgic Encephalomyelitis, NAS, National Academy of Sciences, OCI, organizational conflict of interest, Secretary Sebelius
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 Antidepressants, Canadian Consensus Criteria, CBT, CCC, CFS, CFSAC, CFSAC Recommendation October 2012, CFSAC webinar December 2013, Chronic Fatigue Syndrome, Chronic Multi-Symptom Illness, CMI, Competition Rules, Diagnostic Criteria, Dr. Byron Hyde, Dr. Gailen, Dr. Howard Koh, Dr. Mary Ann Fletcher, Dr. Nancy Lee, Eileen Holderman, Free speech, GET, Government Intimidation, Gulf War Illness, GWI, HHS, Institutional Conflict of Interest, IOM, IOM Study, ME, ME/CFS, Myalgic Encephalomyelitis, NIH, Personal Attacks, Secretary Sebelius, Steven Krafchick, Termination for Convenience
37 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 Aricept, Belviq, Bexsero, Bob Miller, Canagliflozin, CFS, Chronic Fatigue Syndrome, Dr. Janet Woodcock, FDA, Invokana, ME, ME/CFS, Mindy Kitei, Myalgic Encephalomyelitis, Qsymia, Sirturo, Unequal Treatment
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 21 CFR §312.80, 21 CFR §314.105(c), 21 CFR §314.126(c), accelrated approval, Ampligen, April FDA Drug Development Meeting, Bexsero, CFS, Chronic Fatigue Syndrome, Commissioner of the Food and Drug Administration, Dr. Margaret Hamburg, Dr. Theresa Michele, fast track, Improvements in exercise capacity, Improvements in immune-system markers, Jeannette Burmeister, Joseph Pitts, Letter to Dr. Woodcock, life threatening or severely debilitating disease, ME, ME/CFS, meningitis, meningococcus B, Myalgic Encephalomyelitis, Princeton University, priority review, Serious or life-threatening disease, surrogate end points, U.S. House of Representatives, UCSB, Unmet need, Vaccine, Waive criteria for adequate and well-controlled studies
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 #NotAPersonalAttack, CFS, CFSAC, Chronic Fatigue Syndrome, December 2013 Meeting, Dr. Nancy Lee, HHS, ME, ME/CFS, Myalgic Encephalomyelitis
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
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 CFS, CFSAC, Chronic Fatigue Syndrome, Dr. Lee, ME, ME/CFS, Myalgic Encephalomyelitis
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
Thoughts About M.E. 
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 →