Tag Archives: ME

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 Chapman recently tweeted: I posted a series of … Continue reading

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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

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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

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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 intimidation of CFSAC members by … Continue reading

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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) regarding my blog post, “Oops, they did … Continue reading

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Another CFSAC FACA Fail: DFO Misconstrues Law

On Monday, I published a post about CFSAC violating the Federal Advisory Committee Act (“FACA”) by failing to make the the working group’s draft P2P comments available to the public prior to, or at the time of, the January 2015 CFSAC meeting. … Continue reading

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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 Committee Act, again. Not … Continue reading

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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 Associates, the Institutional Review Board (IRB) for this … Continue reading

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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

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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 resonated with … Continue reading

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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 addition to requesting immediate access to various documents relating … Continue reading

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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

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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

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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

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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

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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

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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

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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

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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

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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

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