Monthly Archives: March 2015

Assessing Outcomes

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

This Week in Virology Covers ME/CFS

You may remember This Week in Virology (TWiV) from their XMRV coverage several years ago. I’ve remained an avid listener of the show, simply because it is such a great ongoing conversation about science. And TWiV has continued its coverage … Continue reading

Posted in Commentary | Tagged , , , , , , , , , , , , | 23 Comments

Case Definition Bingo

Our disease is plagued by too many case definitions, with the Institute of Medicine’s Systemic Exertion Intolerance Disease (SEID) being the most recent. Our federal agencies are thus far continuing the agnostic position of accepting whatever case definitions are proposed … Continue reading

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Did P2P Receive Your Comments?

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

Expired Opportunities

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

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