Author Archives: Jennie Spotila

P2P Missteps Continue

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 , , , , , , , , | 15 Comments

Alone in the Woods

I’m happy to share this guest post from Joe Landson. Man, can I relate to this! Each of us patients has that one dear relative, friend, or acquaintance – the one who tells us, repeatedly, that we can do anything … Continue reading

Posted in Occupying | Tagged , , , , , | 27 Comments

Grief: Words Fail

There are a lot of things to say about grief, and I had a much longer post planned for today. But words fail me on this. And as a person whose only outlet is words (as opposed to work, socializing, … Continue reading

Posted in Occupying | Tagged , , , , | 21 Comments

P2P Mistrial

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

Posted in Advocacy | Tagged , , , , , , , , | 55 Comments

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

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , | 40 Comments

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

There is no denying or avoiding the importance of the IOM report and its associated controversies, but ME/CFS advocates must keep eyes on the prize: NIH funding for ME/CFS research. The 2014 spending numbers are out and NIH did not … Continue reading

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