Tag Archives: occupy

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 →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , , | 26 Comments

Delay

Posted on November 3, 2014 by Jennie Spotila

I have been laid low by an infection, and now by the antibiotics I’m taking to treat the infection. So it will be a few days before I post the next few entries on P2P – but stay tuned because … Continue reading →

Posted in Occupying | Tagged , , , | 1 Comment

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 →

Posted in Advocacy | Tagged , , , , , , , , , , , , , | 25 Comments

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 →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , , , | 24 Comments

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 →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , , , , , | 18 Comments

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

Mary Dimmock: Fight the Power

Posted on September 25, 2014 by Jennie Spotila

The draft P2P evidence review report has been issued and we have all had a chance to see just how appallingly bad it is. Now the question is what to do next. Some have called for us to oppose P2P … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , | 42 Comments

Draft Systematic Review is UP

Posted on September 22, 2014 by Jennie Spotila

The draft systematic evidence review on the Diagnosis and Treatment of ME/CFS has been published. This review is extraordinarily important because it is being presented to the P2P Panel in a closed door session any day now. This review will … Continue reading →

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P2P Participation, Part 2

Posted on September 18, 2014 by Jennie Spotila

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 →

Posted in Advocacy | Tagged , , , , , , , , , , , | 14 Comments

Why You Should P2P

Posted on September 8, 2014 by Jennie Spotila

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 →

Posted in Advocacy | Tagged , , , , , , , , , , , , | 35 Comments