Author Archives: Jeannette Burmeister

A New Direction

When I published my blog post last week, “The #CoyneEffect: Is the ME Community Stepping Up or Backing Down?” following my hiatus from advocacy, I did not intend for that to be my return to ME advocacy. I simply felt compelled … Continue reading

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The #CoyneEffect: Is the ME Community Stepping Up or Backing Down?

In order to fully appreciate this entry, please read “Has the ‘Coyne of the Realm’ been devalued?” If you still have steam afterwards, there is more background information in “Standing Up to Coyne and Against Unfair Treatment of ME Advocates.” … 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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Standing Up to Coyne and Against Unfair Treatment of ME Advocates

[Update 5/5/16: For context and background on Ed’s post below, please read my blog post, “Has the “Coyne of the Realm” been devalued?” It describes in detail some of Coyne’s abuse of patients in the ME community, including myself. The mistreatment seems to be ongoing, … Continue reading

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Has the “Coyne of the Realm” been devalued?

[Please also see the follow-up post by my husband, Ed Burmeister, “Standing Up to Coyne and Against Unfair Treatment of ME Advocates.”] A recent addition to the ME advocacy community, Dr. James Coyne, has been celebrated as a savior of ME … 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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Deadline for Comments on Proposed ERISA Disability Regs Fast Approaching: Additional Guidance

We are down to the wire; the deadline for public ERISA (“Employee Retirement Income Security Act”) comments—January 19, 2016—is fast approaching. As of yesterday, the Department of Labor (“DOL”) has received 23 comments in response to its proposed new ERISA … Continue reading

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Proposed ERISA Disability Regs: Instructions and Sample for Public Comments

[Update 1/15/16: additional guidance for your comments here] Below are instructions on how to submit your comments on the new regulations proposed by the Department of Labor (“DOL”) for long-term disability (“LTD”) benefits under the Employee Retirement Income Security Act (“ERISA”). … Continue reading

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Department of Labor Proposes Lowering Bar for ERISA Disability Claims, Requests Public Comments

[Update 1/15/16: instructions for submitting comments here and additional guidance for your comments here] I am happy to report a rare positive development for disability claimants, one that is important to get behind. As most of you know, the rules under the Employee … Continue reading

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The Scientifically Challenged UK Media Strikes Back

Originally posted on Utting-Wolff Spouts:
When I first heard The Telegraph had featured an article concerning a follow-up study of the notorious PACE trial I was inclined to ignore it1. I’ve long become used to the appalling coverage of ME…

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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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Behavioral Health: Undue Influence by NIH on IOM ME/CFS Study

This coming Tuesday is the day of the unveiling of the IOM report on a new clinical case definition and new name for ME/CFS commissioned by HHS for $1 million. Although HHS did everything in their power to lobby for … 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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January 2015 CFSAC Comments: More HHS Disregard for the Law?

Yesterday, I sent the following email to Ms. James, DFO of CFSAC: Dear Ms. James, I heard that the CFSAC P2P Working Group had prepared a document for official submission regarding P2P to be discussed at the upcoming CFSAC meeting … Continue reading

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