Tag Archives: NIH

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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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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December 2014 CFSAC Comments: HHS’s Complete Disregard for Law and Health of Patients

In January, I sued HHS and NIH for violation of the Freedom of Information Act, FOIA, in connection with my FOIA request for documents relating to the IOM study. I won the lawsuit by prevailing on my summary-judgment motion for … 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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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 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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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

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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

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P2P Review Protocol: Still No Transparency

Today, what seems to be the Systematic Review Protocol for the Pathways to Prevention (“P2P”) was published online.The secrecy continues: The publication does not include the names of the technical experts and NIH refused to divulge those names in response to … Continue reading

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P2P: “Patients to Purgatory” or the Jury Model Stood on its Head

“They don’t know. They don’t know anything.”—Susan Maier about the P2P panel members On January 27, 2014, the Institute of Medicine (“IOM”) held its first out of five meetings relating to the development of diagnostic criteria for ME/CFS. It was … Continue reading

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Does the IOM Task Order Comply with Requirements of NIH/NAS Umbrella Contract?

Remember, everybody, that HHS is refusing to comply with the FOIA requests from patients (which is why a lawsuit was filed in federal court to enforce rights under the FOIA)? Because of that, we don’t know for sure what the … Continue reading

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Federal Lawsuit Filed Against HHS and NIH Relating to IOM “Study”

I’m m mad as hell and I’m not going to take this anymore!—Movie “Network” (1976) Today, I filed a lawsuit against HHS and NIH in the U.S. District Court for the Northern District of California for failure to comply with … Continue reading

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HHS and the IOM Saga: The Definition of Insanity and a Bad Case of Stockholm Syndrome

[I have borrowed somewhat from my prior blog posts and my legal complaints for this piece, but I’ve added on, so to speak, based on recent events and I thought it might be helpful to have all the arguments in … Continue reading

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Thoughts on the May 2013 CFSAC Meeting

I’ll have a lot more thoughts about this week’s CFSAC meeting in Washington, D.C. once I get a chance to watch the videos because I wasn’t well enough to take notes or attend (or closely follow) the entire meeting. But … Continue reading

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Mary Dimmock’s May 2013 CFSAC Testimony

Patients have been asking  where they can find Mary Dimmock’s CFSAC testimony from today and she has graciously agreed for me to publish it here. I have a few things to say about this CFSAC meeting, but I need to … Continue reading

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