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Tag Archives: HHS
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
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
P2P FOIA Documents, Part 6—”File all these responses. No need to answer them directly.”
Here are more P2P emails that were produced to me after I won my IOM FOIA lawsuit. Today’s documents are NIH and AHRQ emails relating to inquiries from the public regarding the ME/CFS P2P program and the “TPs,” the talking points NIH developed … Continue reading
Posted in Uncategorized
Tagged AHRQ, Beth Collins Sharp, CFS, Chronic Fatigue Syndrome, David Murray, Fasten your Seatbelts, FOIA, Francis Collins, Freedom of Information Act, HHS, Institute of Medicine, IOM, James Anderson, Mariela Shirley, ME, ME/CFS, Myalgic Encephalomyelitis, NIH, ORWH, P2P, Paris Watson, Pathways to Prevention, Susan Maier, Talking Points, TPs
25 Comments
Federal Court awards $139,147 in Attorneys’ Fees Against HHS and NIH in IOM FOIA Case
The U.S. District for the Northern District of California awarded me today–having won my FOIA lawsuit–my entire attorneys’ fees in the amount of $139,147. Judge Vince Chhabria ordered the defendants, HHS and NIH, to pay me these fees. Please see below for a … Continue reading
Posted in Uncategorized
Tagged Attorneys' Fees, Baker & McKenzie LLP, Burmeister, CFS, Chronic Fatigue Syndrome, FOIA, Freedom of Information Act, HHS, Institute of Medicine, IOM, Judge Vince Chhabria, ME, ME/CFS, Myalgic Encephalomyelitis, NIH, U.S. District Court for the Northern District of California, Unreasonable Conduct
54 Comments
P2P: “Pleased to Participate?” Not. Count me out!
Here is my open protest letter to Secretary Burwell (with carbon copies to Dr. Collins and Dr. Frieden) regarding the ME/CFS P2P program. As you will note, I am not engaging substantively at all. Instead, I am protesting the process … Continue reading
Posted in Uncategorized
Tagged AHRQ, CFS, Dr. Francis Collins, Dr. Kronick, Galileo Galilei, HHS, Inquisition, Jury Model, ME, ME/CFS, Ms. Sylvia Burwell, NIH, P2P, Pathways to Prevention, Witchcraft Trials
15 Comments
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
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
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
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
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
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
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
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
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
Thoughts About M.E. 
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 →