Tag Archives: IOM

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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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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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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Brian Vastag to Dr. Francis Collins

Posted on July 15, 2015 by Jennie Spotila

Yesterday, an open letter from science writer Brian Vastag to Dr. Francis Collins (Director, NIH) flashed around the ME/CFS social media-sphere like lightning. Then it spread among Brian’s high profile colleagues, like Martin Enserink and Carl Zimmer. Brian’s letter is … Continue reading →

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Showing the Back of Their Heads

Posted on June 22, 2015 by Jennie Spotila

The final P2P report is published, and now it’s time to evaluate the quality of the recommendations and how well the process served ME/CFS patients. There are many good things in the P2P report, and I’ll be focusing on those … Continue reading →

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P2P Final Chapter

Posted on June 16, 2015 by Jennie Spotila

The final P2P ME/CFS documents are coming out today. I am severely crashed from family obligations, so in-depth analysis will take me a little longer than normal. But here are quick descriptions of the various articles to get you started: … Continue reading →

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Stuck? Four Months of Almost Nothing

Posted on June 13, 2015 by Jennie Spotila

In this guest post, Dr. Alan Gurwitt argues that it is time for ME/CFS advocacy to move on and move forward. The post first appeared on the website for the Massachusetts CFIDS/ME & FM Association, and is reprinted here with … Continue reading →

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The Burial of ME

Posted on May 8, 2015 by Jennie Spotila

Mary Dimmock has published an extraordinary review of the last thirty years of ME history. With her permission, I’ve reported her announcement with the link to the full document below. I highly recommend reading as much of this document as … Continue reading →

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Awareness Reboot

Posted on May 5, 2015 by Jennie Spotila

Today’s post comes from Denise Lopez-Majano. She makes a powerful argument for the kind of awareness campaign we need. The release of the Institute of Medicine report resulted in an unprecedented amount of media coverage and public discussion. As has … Continue reading →

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This Week in Virology Covers ME/CFS

Posted on March 29, 2015 by Jennie Spotila

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 →

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