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Tag Archives: NIH
Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits
Many ME/CFS* sufferers are covered by employer-sponsored long-term disability (“LTD”) policies. These policies almost universally limit LTD benefits to 24 months for disability caused—or even just contributed to—by a mental/nervous disorder. The following language is taken from a current policy … Continue reading
Posted in Uncategorized
Tagged CFS, Chemobrain, Chronic Fatigue Syndrome, Disability insurance, Dr. Brian Walitt, If chronic fatigue syndrome/myalgic encephalomyelitis is all in your head it’s only because your head is part of your body., Long-Term Disability, ME, ME/CFS, Mental/nervous disorder, Myalgic Encephalomyelitis, NIH, NIH intramural study of post-infectious ME/CFS, Somatic Symptom Disorder, Somatoform Disorder
53 Comments
Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience?
NIH has tapped Dr. Brian Walitt as the lead clinical investigator for its intramural study “Post-Infectious Myalgic Encephalomyopathy/Chronic Fatigue Syndrome.” (For terminology, please see the end of the post.) Only a few months ago—in September 2015—Dr. Walitt gave an interview … Continue reading
Posted in Uncategorized
Tagged Brian Walitt, CDC Grand Rounds, CFS, Charlotte von Salis, Chronic Fatigue Syndrome, Disorders of Subjective Perception, Ella Peregrine, Fibromyalgia, Fred Gill, Interview, Joel Nigg, Lead Clinical Investigator, ME, ME/CFS, Myalgic Encephalomyelitis, NIH, NIH Study, Range of Normal, Transcript
70 Comments
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 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
P2P FOIA Documents, Part 3—NIH Organizational Meeting: ME/CFS is a “Burden” for Patients
Here is another batch from the P2P documents NIH produced in response to my P2P FOIA request. These are documents relating to the P2P (then called the Evidence-based Methodology Workshop) organizational meeting. The meeting took place on February 19, 2013. It … Continue reading
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 FOIA Documents, Part 2: “We also recently had a FOIA request on CFS”
I am continuing to release documents (this time, emails only) I received from HHS in response to my P2P FOIA request. A lot of these email exchanges will show clearly the disdain, condescension and hostility towards our community. They also … Continue reading
P2P FOIA Documents, Part 1
Earlier in the year, I filed a FOIA request with HHS for documents relating to the ME/CFS P2P. Although I received some fairly unremarkable and some heavily redacted documents a while ago, I received the vast majority of documents, which … Continue reading
Posted in Uncategorized
Tagged CFS, EbMW, FOIA, ME, ME/CFS, NIH, OSHU, P2P, Pathways to Prevention
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
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
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
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
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
Thoughts on the May 2013 CFSAC Meeting
I’ll have a lot more thoughts about this week’s CFSAC meeting in Washington, D.C. once I get a chance to watch the videos because I wasn’t well enough to take notes or attend (or closely follow) the entire meeting. But … Continue reading
Posted in Uncategorized
Tagged Alaine Perry, Ampligen, Bob Miller, Case Definition, CFS, Chronic Fatigue Syndrome, Dr. Elizabeth Unger, Dr. Gailen Marshall, Dr. Howard Koh, Dr. Mary Ann Fletcher, Dr. Nancy Lee, Dr. Susan Maier, Eileen Holderman, FDA, Hemispherx, May 2013 CFSAC, ME, ME/CFS, Myalgic Encephalomyelitis, NIH, out of order, Seamon Corporation, Steven Krafchick
38 Comments
Mary Dimmock’s May 2013 CFSAC Testimony
Patients have been asking where they can find Mary Dimmock’s CFSAC testimony from today and she has graciously agreed for me to publish it here. I have a few things to say about this CFSAC meeting, but I need to … Continue reading
Posted in Uncategorized
Tagged Canadian Consensus Criteraia, CFS, CFSAC May 2013, definition, FDA, Mary Dimmock, ME, ME/CFS, NIH, Oxford, PEM
5 Comments
Thoughts About M.E. 