Tag Archives: priorities

P2P Report: First Read

Posted on December 19, 2014 by Jennie Spotila

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

Posted on December 1, 2014 by Jennie Spotila

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

Posted on November 17, 2014 by Jennie Spotila

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

Posted on November 10, 2014 by Jennie Spotila

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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P2P: The Disinvite List

Posted on November 6, 2014 by Jennie Spotila

UPDATED November 10 11, 2014 (see below) Last week, I focused on the problematic choice of several speakers for the P2P Workshop. Today, we’re going to focus on the speakers who were NOT invited to the Workshop. How do I … Continue reading →

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Illness Beliefs (or Why I Am Not an ME/CFS Activist)

Posted on October 21, 2014 by Jennie Spotila

Today, Joe Landson shares his thoughts on how the false illness beliefs (or even cognitive bias) among scientists is holding our field back. Joe says it is time to tear down the walls and think horizontally – to the horizon, … Continue reading →

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Comments on P2P Systematic Evidence Review

Posted on October 18, 2014 by Jennie Spotila

After four weeks of intense work, a group of advocates has submitted forty pages of comments on the P2P systematic evidence review. We published a summary of our comments last week. If you want to read the full document, you … Continue reading →

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Evidence Review Comments Preview

Posted on October 15, 2014 by Jennie Spotila

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)

Posted on October 6, 2014 by Jennie Spotila

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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A Review of the P2P Systematic Review

Posted on September 29, 2014 by Jennie Spotila

The draft systematic evidence review on the Diagnosis and Treatment of ME/CFS was published online last week. It’s a monster – 416 pages in total. I know many ME/CFS patients may not be able to read this report, so in … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , | 44 Comments