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Tag Archives: Chronic Fatigue Syndrome
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
52 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
69 Comments
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
267% Price Increase for Ampligen
[Please see here for my follow-up letter to Dr. Woodcock.] I just sent the following message regarding Hemispherx’s extraordinary 267% price increase for Ampligen to Dr. Janet Woodcock, the FDA’s Director of the Center for Drug Evaluation and Research: Dear Dr. … Continue reading
Posted in Uncategorized
Tagged Ampligen, CFS, Chronic Fatigue Syndrome, Dr. Woodcock, FDA, HEB, Hemispherx, ME, ME/CFS, Myalgic Encephalomyelitis, Price Increase
31 Comments
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
P2P FOIA Documents, Part 5—ME/CFS P2P Violates NIH Rules, Woot Woot!
Starting in August of last, year, NIH went through the elaborate process of rebranding the program that had until then been known as the Evidence-based Methodology Workshop (“EbMW”). The new shiny brand that emerged after an enormous bureaucratic effort—whose necessity is less … Continue reading
Posted in Uncategorized
Tagged CFS, Chronic Fatigue Syndrome, Controversy, EbMW, Evidence-base, Fred Friedberg, ME, ME/CFS, Myalgic Encephalomyelitis, P2P, Paris Watson, Pathways to Preve, Rebranding, Susan Maier, Woot Woot
52 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 4–NIH: Neither Patients Nor Science Meant to Be Part of P2P
The documents I am releasing today at this link relate to the P2P working group. I published some of them previously in my P2P FOIA Documents, Part 2: “We also recently had a FOIA request on CFS.” But to I thought t would … Continue reading
Posted in Uncategorized
Tagged Buzzfeed, CFS, Chronic Fatigue Syndrome, David Tuller, FOIA, Freedom of Information Act, ME, ME/CFS, Myalgic Encephalomyelitis, Oregon Health and Science University, OSHU, P2P, Paris Watson, Pathways to Prevention, Susan Maier, Suzanne Vernon, Working Group, Workshop
20 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: 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
Thoughts About M.E. 