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FACA Request: Did HHS Orchestrate CFSAC’s P2P Comments?
Today, I filed a request with Barbara James, DFO of CFSAC, under the Federal Advisory Committee Act (FACA) regarding the January 13, 2015 CFSAC meeting and CFSAC’s P2P comments. My letter, which in...
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Hip Surgery and ME: Society Has It Wrong
I am proud to share a note that my husband, Ed Burmeister, wrote last week. He initially posted it on Facebook only where it received a lot of attention and was shared more than 250 times. It really...
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267% Price Increase for Ampligen
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...
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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...
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Oops, they did it again! CFSAC violates FACA
This is a post about the violation of federal law by CFSAC yet again. This is also a post about how HHS has controlled CFSAC’s input on the P2P report. CFSAC violated FACA, the Federal Advisory...
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Yes, CFSAC, there is a FACA violation
“Yes, Virginia, there is a Santa Claus.”–From an 1897 editorial, “Is there a Santa Claus?” of The New York Sun I was contacted by a member of the Chronic Fatigue Syndrome Advisory Committee (CFSAC)...
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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...
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Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as...
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...
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Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term...
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...
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The #CoyneEffect: Is the ME Community Stepping Up or Backing Down?
I have received a number of messages from members of the community inquiring about my absence from ME advocacy and about my health. I deeply appreciate the concerns and thoughtfulness. James David...
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