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Tag Archives: ME
P2P: Don’t Buy the Hype! Protest!
The reason why I will not cooperate with, or participate or engage in, the P2P process is very simple. HHS and NIH have shown time and time again that they do not have ME patients’ interest at heart. This disturbing … Continue reading
Posted in Uncategorized
Tagged Canadian Consensus Criteria, CCC, CFS, Chronic Fatigue Syndrome, FOIA, HHS, Jury Model, ME, Myalgic Encephalomyelitis, NIH, P2P, Protest
13 Comments
US District Court: HHS/NIH Violated Federal Law in Response to FOIA Request for IOM Documents
I am pleased to give an update on my FOIA lawsuit: Yesterday, the United States District Court for the Northern District of California ruled that HHS and NIH (government) violated the Freedom of Information Act (FOIA) when they improperly withheld … Continue reading
Posted in Uncategorized
Tagged CFS, Chronic Fatigue Syndrome, Exhaustion of Administrative Remedies, FOIA, Freedom of Information Act, HHS, Improper Withholding of Documents, Institute of Medicine, IOM, ME, ME/CFS, Moot, Myalgic Encephalomyelitis, NIH, Summary Judgment, the case law says exactly the opposite of what counsel for the government represented at the hearing, Unreasonably narrow interpretation, US District Court for Northern District of California
72 Comments
My June 2014 CFSAC Testimony: Tribute to Eileen Holderman
First, I ‘d like to congratulate the newly appointed committee members. The patient community is particularly excited about the addition of Dr. Jose Montoya, a true ME/CFS expert with crucial clinical and research experience in our disease, something HHS committees … Continue reading
OIG Fails to Investigate IOM Conflict of Interest & Tells ME/CFS Patients to Buzz Off
And once again, I received a perfunctory reply from the Office of the Inspector General (OIG) basically telling the entire ME/CFS community to buzz off (my reply is below). Am I surprised? Absolutely not. We’ve been mistreated and disrespected by … Continue reading
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
Posted in Uncategorized
Tagged CFS, Chronic Fatigue Syndrome, ME, ME/CFS, Myalgic Encephalomyelitis, NIH, P2P, Pathways to Prevention, Systematic Review Protocol
9 Comments
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
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
Posted in Uncategorized
Tagged Case Defnition, CFS, Chronic Fatigue Syndrome, COI, Conflict of Interest, Diagnositic Criteria, Gulf War Illness, GWI, Impaired Objectivity, Inspector General, Institute of Medicine, IOM, ME, ME/CFS, Myalgic Encephalomyelitis, OIG, Organzational Conflict of Interest
13 Comments
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
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
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
Thoughts About M.E. 
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 →