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Recent Posts
- A New Direction
- The #CoyneEffect: Is the ME Community Stepping Up or Backing Down?
- Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits
- Standing Up to Coyne and Against Unfair Treatment of ME Advocates
- Has the “Coyne of the Realm” been devalued?
- Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience?
- Deadline for Comments on Proposed ERISA Disability Regs Fast Approaching: Additional Guidance
- Proposed ERISA Disability Regs: Instructions and Sample for Public Comments
- Department of Labor Proposes Lowering Bar for ERISA Disability Claims, Requests Public Comments
- The Scientifically Challenged UK Media Strikes Back
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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
Posted in Uncategorized
26 Comments
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
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
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
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
Posted in Uncategorized
Tagged Department of Labor, Disability Benefits, DOL, ERISA, Long-Term Disability, LTD, Proposed Regulations
28 Comments
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…
Posted in Uncategorized
3 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
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
Posted in Uncategorized
Tagged Ed Burmeister, Hip Surgery, ME, Myalgic Encephalomyelitis
32 Comments
Undue Influence by NIH on IOM ME/CFS Study: NIH’s Insistence on Including Behavioral Health on IOM Committee
Many of you may remember HHS’s touting of the IOM as an institution that provides objective and independent advice. That does not jibe with the charge by Steven Coughlin, PhD, MPH, adjunct professor of epidemiology at Emory University in Atlanta, … Continue reading
Posted in Uncategorized
23 Comments
Thoughts About M.E. 