Tag Archives: recommendations

We Are All Noncompliant

Posted on March 2, 2016 by Jennie Spotila

I learned something about ME/CFS advocacy from a comic book. Now wait, stay with me. I realize this sounds bizarre, especially coming from me. I haven’t read a comic book since I was eight years old. Enter Bitch Planet, a … Continue reading →

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Survey: Barriers to NIH Funding

Posted on January 12, 2016 by Jennie Spotila

Reprinted with permission of Lily Chu: Over the years, IACFS/ME Board members have heard anecdotally from researchers, clinicians, and others that obtaining government-sponsored funding for research related to ME/CFS can be quite challenging, in some cases more challenging than that … Continue reading →

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Add Your Voice to the Call to Investigate PACE

Posted on November 18, 2015 by Jennie Spotila

(reprinted with permission) Twelve U.S. ME/CFS organizations have called on the Centers for Disease Control and Prevention (CDC) and Agency for Health Research & Quality (AHRQ) calling on them to investigate the PACE trial concerns outlined by David Tuller and … Continue reading →

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The NIH Plan

Posted on November 4, 2015 by Jennie Spotila

(updated November 9, 2015) Unless you have been avoiding the internet for the last week, you already know that NIH has made a big announcement regarding its plans for ME/CFS research. Dr. Francis Collins has made some remarkable and welcome … Continue reading →

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CFSAC Testimony, Jennie Spotila, August 18, 2015

Posted on August 17, 2015 by Jennie Spotila

Unfortunately, I am too sick to offer public comment by telephone for the August 18-19, 2015 meeting of the CFS Advisory Committee. I submitted these written comments for the record. Thank you to all of the advocates who are speaking … Continue reading →

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CDC: Speculations and Consequences

Posted on August 12, 2015 by Jennie Spotila

Controversy continues over the Senate appropriations committee report’s recommendation that the CDC’s CFS program funding be eliminated for FY 2016. We have certainly debated the merits and faults of the program from just about every angle on this blog. But … Continue reading →

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No CDC Funding for CFS?

Posted on August 4, 2015 by Jennie Spotila

ME/CFS advocates focus almost exclusively on research funding from the National Institutes of Health, and with good reason. But now it appears that funding for the Centers for Disease Control’s CFS program may be at risk in the 2016 appropriations … Continue reading →

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Deadlines and Opportunities

Posted on July 30, 2015 by Jennie Spotila

There are a number of opportunities for ME/CFS advocacy right now – all of which you can do on your own from home! Here are the details: CFS Advisory Committee Public Comment: The Federal Register notice for the August 18-19th … Continue reading →

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A New Strategic Plan

Posted on July 28, 2015 by Jennie Spotila

The National Institutes of Health is creating its first strategic plan, at the request of Congress. The public now has an opportunity to comment, and this is an important opportunity to reinforce the need for ME/CFS research funding. Liz Willow … Continue reading →

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The Return of CFSAC

Posted on July 22, 2015 by Jennie Spotila

Publicly, the CFS Advisory Committee has been MIA this year. There were some comings and goings, and general silence, but now there is finally movement to report. UPDATE July 28, 2015: The Federal Register notice for the meeting has been … Continue reading →

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