Tag Archives: action

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 →

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

Assessing Outcomes

Posted on March 31, 2015 by Jennie Spotila

The IOM, P2P and AHRQ reports all pointed out a serious gap in ME/CFS research: the absence of validated ways of assessing clinical outcomes. I have new information about an initiative to change that, and I’ll be speaking about my … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , | 20 Comments

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 →

Posted in Advocacy | Tagged , , , , , , , , , | 17 Comments

2014 NIH Spending on ME/CFS Studies

Posted on March 4, 2015 by Jennie Spotila

Update: This post was revised on October 29, 2016 to correct mathematical errors and update the included research. There is no denying or avoiding the importance of the IOM report and its associated controversies, but ME/CFS advocates must keep eyes … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 30 Comments

IOM: Report Card

Posted on February 10, 2015 by Jennie Spotila

It’s here. A new case definition and a new name. It will take some time for me to get through the 300 page report and prepare a more detailed analysis. But based on the press conference and summary, how did … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , | 61 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 →

Posted in Advocacy | Tagged , , , , , , , , , , , , , , | 8 Comments

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 →

Posted in Advocacy | Tagged , , , , , , , | 2 Comments

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 →

Posted in Advocacy | Tagged , , , , , , , , , | 15 Comments

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

CFSAC: Stand Up for Your Work

Posted on December 3, 2014 by Jennie Spotila

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 →

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