Tag Archives: politics

Case Definition Bingo

Posted on March 23, 2015 by Jennie Spotila

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?

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

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

PEM Differential

Posted on February 25, 2015 by Jennie Spotila

One of the post-IOM controversies consuming advocates at the moment is the concern that SEID criteria are non-specific and will include people who do not have our disease. The failure to list exclusionary conditions, including psychological disorders, has drawn criticism … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , | 42 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

NPR Interview

Posted on February 11, 2015 by Jennie Spotila

Miriam Tucker has been covering ME/CFS for some time now, and published a great piece for NPR about the IOM report today. I was interviewed for the piece, and I can say that Miriam understands this disease, much like David … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , | 19 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

IOM: The Big Day

Posted on February 6, 2015 by Jennie Spotila

On February 10th, the Institute of Medicine committee will release its report Beyond ME/CFS: Redefining an Illness. The release event will be webcast at 11am Eastern. The report contents are under embargo until the release, although rumors are flying about … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , | 19 Comments

Guest Post: Slightly Snarky

Posted on February 2, 2015 by Jennie Spotila

Joe Landson authors this guest post on the chasm between patient experiences and the people who need to understand them. We suffer through many devastating symptoms, but today I’m only thinking of one. It’s perhaps the most devastating effect of … Continue reading →

Posted in Commentary | Tagged , , , , , , , | 5 Comments