Tag Archives: testimony

The Return of CFSAC

Publicly, the CFS Advisory Committee has been MIA this year. There were some comings and goings, and general silence, but now there is finally movement to report. UPDATE July 28, 2015: The Federal Register notice for the meeting has been … Continue reading

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Showing the Back of Their Heads

The final P2P report is published, and now it’s time to evaluate the quality of the recommendations and how well the process served ME/CFS patients. There are many good things in the P2P report, and I’ll be focusing on those … Continue reading

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P2P Library Now Available

As I promised in my previous post, I have created a library of public comments submitted to NIH on the P2P Panel’s draft report. You can view links to each comment on this page. I will update the page with … Continue reading

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CFSAC: Stand Up for Your Work

I delivered this public comment by telephone at the December 3, 2014 CFS Advisory Committee meeting. This committee’s legitimacy is at stake. Nine months ago, your March meeting recommendations were substantially altered after your public vote. Documentary evidence that I … Continue reading

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CFSAC SNAFU

We’ve known about the CFS Advisory Committee meeting on December 3rd and 4th for awhile, but yesterday the details came out about the agenda and public comment. Judging from the advocates I’ve talked to, it’s not going over well. If … Continue reading

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Why You Should P2P

My concerns about the NIH’s Pathways to Prevention Workshop on ME/CFS are legion, and I’ve been quite vocal about them. But today I am asking you to participate in the P2P Workshop on December 9-10, 2014. Registration for attending in … Continue reading

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ME/CFS Mortality

Does ME/CFS kill? This critical question has received very little attention from researchers, but there is a way for you to help change that. The first paper on causes of death in ME/CFS was published in 2006 by Dr. Leonard … Continue reading

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Parsing CFSAC

I feel like a broken record, saying that the June 16-17th CFS Advisory Committee meeting was frustrating. This meeting struck me as a tangle of threads that can only be understood by teasing them apart. There were signals buried in … Continue reading

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Guest Post: CFSAC Testimony of Andrew Bokelman

Andrew Bokelman was scheduled to deliver public comment to the CFS Advisory Committee on June 17th and was the first telephone commenter. His call was terminated by the operator prior to his 3 minutes being up. After protest on Andrew’s … Continue reading

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Guest Post: CFSAC Comments of Charmian Proskauer

Charmian delivered these comments at today’s CFS Advisory Committee meeting. She has kindly given me permission to publish them here in their entirety. My name is Charmian Proskauer, and I currently serve as President of the Massachusetts CFIDS/ME & FM … Continue reading

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