Tag Archives: priorities

CFSAC Goings and Comings

Posted on April 27, 2015 by Jennie Spotila

There are a number of CFS Advisory Committee tidbits to share, with more goings than comings. Barbara James, the CFSAC Designated Federal Officer, is retiring from HHS at the end of April. No word on who will replace her. It’s … Continue reading →

Posted in Advocacy | Tagged , , , , , | 3 Comments

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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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 →

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Expired Opportunities

Posted on March 10, 2015 by Jennie Spotila

NIH funding of ME/CFS research has bumped up against a deadline that could have dire consequences for 2015 and beyond. The primary mechanism for grant applications has expired. Grant applications to NIH must be submitted in response to calls for … Continue reading →

Posted in Research | Tagged , , , , , , , , , , , | 18 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

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 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