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Tag Archives: IOM
P2P FOIA Documents, Part 7—Collins, Murray and Maier: Trouble in NIH Paradise
David Murray’s (Director of NIH’s Office of Disease Prevention) noticing of a ProHealth blog entry started an avalanche of bizarre email exchanges within NIH that included, among others, Francis Collins, James Anderson and Larry Tabak. I received these emails after winning my … Continue reading
Posted in Uncategorized
Tagged Canadian Consensus Criteria, CCC, CFS, Chronic Fatigue Syndrome, David Murray, Francis Collins, Institute of Medicine, IOM, James Anderson, Larry Tabak, ME, ME/CFS, Myalgic Encephalomyelitis, Nancy Lee, NIH, P2P, Paris Watson, Pathways to Prevention, Susan Maier, Wilma Peterman Cross
50 Comments
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
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
Thunderclap to Oppose the IOM, Support the CCC: Let Our Voices be Heard Loud and Clear
The next IOM meeting will be held on May 5th and 6th. A whooping one fourth of the meeting is open to the public’s listening in. No public participation is allowed, except for comments by a few, hand select people. … Continue reading
Posted in Uncategorized
Tagged Institute of Medicine, IOM, IOM meeting May 5th 6th, Thundercap instructions, Thunderclap
30 Comments
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
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
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
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
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
Twilight Zone: IOM Committee Nominations Not Even in the Realm of Reasonableness
Today, the IOM published the provisional IOM committee appointments for the institution’s ME/CFS “study.” I have only taken a brief look at the list of nominees. Others are in the process of “vetting” the nominees and researching their background. I … 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
Call for Investigation by the Inspector General of the IOM’s Conflict of Interest With Respect to ME/CFS
[Updates: 2013/11/17: Supplemental Request for Investigation by OIG: Did DHHS Violate its No-Bid-Contract Requirements for IOM Contract? 2014/01/08: After OIG Dodges Charge of IOM’s Conflict of Interest, Meaningful Reply Demanded 2014/04/04: IOM-OCI-OIG … OMG! 2014/05/28: OIG Fails to Investigate IOM Conflict of Interest & … Continue reading
Posted in Uncategorized
Tagged 2013, 48 C.F.R. section 9.504, 48 C.F.R. section 9.505, Bias, Case Definition, CFS, Chronic Fatigue Syndrome, Chronic Multisymptom Illness, CMI, Conflict of Interest, DHHS, Diagnostic Criteria ME/CFS, Gulf War Illness, GWI, Inspector General, Investigation, IOM, IOM CMI Report, IOM Contract, ME, ME/CFS, Mr. Daniel Levinson, Myalgic Encephalomyelitis, Open Advocates' Letter November 9, Open Experts' Letter October 25, organizational conflict of interest, Secretary Sebelius, \
47 Comments
66 ME/CFS Advocates Send Letter to Secretary Sebelius in Support of their Experts
Today, 66 ME/CFS advocates sent a letter to Department of Health and Human Services Secretary Kathleen Sebelius, joining 50 ME/CFS experts in calling for the adoption of the Canadian Consensus Criteria (CCC) as the definition of the disease as well … Continue reading
Posted in Uncategorized
Tagged Canadian Consensus Criteria, CCC, CFS, Chronic Fatigue Syndrome, Dr. Anthony Fauci, Dr. Francis Collins, Dr. Harold Varmus, Dr. Harvey Fineberg, Dr. Howard Koh, Dr. Margaret Hamburg, Dr. Richard Kronick, Dr. Thomas Frieden, Dr. Wanda Jones, HHS IOM Contract, IOM, ME, ME/CFS, ME/CFS Advocates, ME/CFS Experts, Ms. Carolyn W. Colvin, Ms. Marilyn Tavenner, Myalgic Encephalomyelitis, Secretary Sebelius, Senator Jerry Moran, Senator Tom Harkin
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 →