Tag Archives: CDC

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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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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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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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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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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Very Very Aware

Posted on May 12, 2015 by Jennie Spotila

May 12th is International ME/CFS Awareness Day, selected because it is Florence Nightingale’s birthday. If you look around blogs and social media today, you’ll probably see a lot of blue ribbons and statements from patients. There’s the May 12th Blog … 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 →

Posted in Advocacy, Commentary, Occupying, Research | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , | 14 Comments

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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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 →

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