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Tag Archives: CFSAC
Holding HHS Accountable for Unrelenting and Unrepentant Legal Violations
Many members of the community have called out HHS for legal violations over the years, such as Dr. Mary Ann Fletcher and Ms. Eileen Holderman confronting Dr. Nancy Lee, DFO of CFSAC, for her attempted intimidation of CFSAC members by … Continue reading
CFSAC Comments August 2015: Ampligen Price Increase on Shaky Ground
I looked into the Ampligen issue–the exorbitant 267% price increase by Hemispherx–some more. Here is one thing that patients who are currently enrolled in the trial can do. They can contact Schulman Associates, the Institutional Review Board (IRB) for this … Continue reading
December 2014 CFSAC Comments: HHS’s Complete Disregard for Law and Health of Patients
In January, I sued HHS and NIH for violation of the Freedom of Information Act, FOIA, in connection with my FOIA request for documents relating to the IOM study. I won the lawsuit by prevailing on my summary-judgment motion for … Continue reading
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
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
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
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
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
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
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
Posted in Uncategorized
Tagged Approval by Competition Advocate, CFS, CFSAC, Chronic Fatigue Syndrome, Chronic Multisymptom Illness, CICA, CMI, Competition in Contracting Act, Daniel Le, Deborah Griffn, DHHS, Dr. Kenneth Shine, FedBizOpps.gov, Federal acquisitions, Forbes, Full and open competition, Gulf War Illness, GWI, HHS Competition Advocate, Inspector General, Institute of Medicine, IOM, IOM Contract, Justification, ME, ME/CFS, ME/CFS Case Definition, ME/CFS Diagnostic Criteria, Myalgic Encephalomyelitis, Open-Competition Requirements, Procurement Notice, Responsible Source, Sole-Source Solicitation
10 Comments
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
Thoughts About M.E. 
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 →