Tag Archives: funding

P2P Report: First Read

The P2P Panel’s draft report on advancing ME/CFS research has been published. The report is not the nightmare that many people feared, but it is also not what I had hoped for or what we need. The advocacy chatter I’ve … Continue reading

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NIH: Passing ME/CFS Over Again

NIH will (in its own mind anyway) be showcasing ME/CFS at the P2P Workshop next week. But ME/CFS research at NIH is caught in a never-ending cycle of being passed over in every way that matters. At its June 2014 … Continue reading

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P2P: Not This Science

The P2P Workshop agenda focuses on a few broad categories of ME/CFS research: characteristics of the ME/CFS population; fostering innovative research; presentation and diagnosis in clinic; and, tools and measures for diagnosis and outcomes. Yet even with the late addition … Continue reading

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P2P and Dr. Francis Collins

On January 3, 2014, just three days before the P2P Working Group meeting, a troubling series of emails was exchanged among NIH leadership. These emails show confusion at the leadership level about the ME/CFS P2P and IOM efforts, and a … Continue reading

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Evidence Review Comments Preview

This post comes via Mary Dimmock, Claudia Goodell, Denise Lopez-Majano, and myself. You are welcome to publish it on your site with attribution and a link back to this post. You are also welcome to use this (and other material … Continue reading

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They Know What They’re Doing (Not)

This post comes via Mary Dimmock, with assistance from Claudia Goodell, Denise Lopez-Majano, and myself. You are welcome to publish it on your site with attribution to Mary Dimmock.   Last week, Jennie Spotila and Erica Verillo posted summaries of … Continue reading

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NIH Says No, and Also No

With no announcement or fanfare, the CFS Advisory Committee has posted a response from HHS to the June 2014 recommendations. My information is that  – inexplicably – even CFSAC members were not notified when the response was posted. I urge … Continue reading

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P2P Participation, Part 2

I have new information on participation in the Pathways to Prevention ME/CFS Workshop: The Office of Disease Prevention confirmed via telephone that the public will be able to participate in discussion at the P2P Workshop, in person and online. ODP … 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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