Tag Archives: P2P

P2P Missteps Continue

Posted on April 20, 2015 by Jennie Spotila

There are new developments in the continuing saga that is the NIH’s Office of Disease Prevention’s mismanagement of public comment on the P2P report. When I last wrote about this on April 3rd, ODP had acknowledged that yes indeed, they … Continue reading →

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P2P Mistrial

Posted on April 3, 2015 by Jennie Spotila

Yesterday, the following notice appeared on the P2P ME/CFS website in a red box: Important Notice: The ODP recently discovered that one set of public comments was not forwarded to the panel for consideration. Because the ODP is committed to … Continue reading →

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Did P2P Receive Your Comments?

Posted on March 17, 2015 by Jennie Spotila

The P2P report is scheduled to be published on April 14, 2015, but new information may call the legitimacy of the report into question. Based on NIH’s response to my FOIA request, I believe it is possible that the Office … Continue reading →

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Your Move, HHS

Posted on February 17, 2015 by Jennie Spotila

Since the IOM report came out, the patient/advocate online community has been on fire. Everyone is staking out a position. You like the name, or you don’t; you think the definition will work, or it won’t. And I have plenty … Continue reading →

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

CFSAC Meets P2P

Posted on January 15, 2015 by Jennie Spotila

Mary Dimmock has been kind enough to provide this post and transcript of the CFS Advisory Committee’s discussion of the P2P report this week. Since the Executive Summary for the P2P ME/CFS Workshop was published on December 18, 2014, a … Continue reading →

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P2P Library Now Available

Posted on January 10, 2015 by Jennie Spotila

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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P2P Obstacles

Posted on January 7, 2015 by Jennie Spotila

Are you working on your comments on the P2P Panel’s Draft Report? I hope so! Unfortunately, the Office of Disease Prevention (ODP) has taken several actions that create barriers in the commenting process. I have details, and I suggest several … Continue reading →

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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 →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , | 38 Comments

P2P: Eating Your Cake

Posted on December 10, 2014 by Jennie Spotila

In a surprising move at the P2P Workshop yesterday, Dr. Beth Smith from the Evidence Practice Center (authors of the systematic evidence review) suggested: “Consider retiring the Oxford case definition.” Why was this remarkable? Because the systematic evidence review had … Continue reading →

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The Oxford Problem

Posted on December 8, 2014 by Jennie Spotila

Today, I’m very pleased to share this guest post by Chris Heppner. I loved Oxford when there as undergraduate (1951-4)–truly a city of dreaming spires, peaceful libraries, walks in the country to a lovely old pub by a waterfall with … Continue reading →

Posted in Commentary, Research | Tagged , , , , , , , , , , , , | 10 Comments