Category Archives: Advocacy

Draft Systematic Review is UP

Posted on September 22, 2014 by Jennie Spotila

The draft systematic evidence review on the Diagnosis and Treatment of ME/CFS has been published. This review is extraordinarily important because it is being presented to the P2P Panel in a closed door session any day now. This review will … Continue reading →

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P2P Participation, Part 2

Posted on September 18, 2014 by Jennie Spotila

I have new information on participation in the Pathways to Prevention ME/CFS Workshop: The Office of Disease Prevention confirmed via telephone that the public will be able to participate in discussion at the P2P Workshop, in person and online. ODP … Continue reading →

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Charter Changes

Posted on September 16, 2014 by Jennie Spotila

It came down to the wire, but HHS Secretary Sylvia Burwell has renewed the charter of the CFS Advisory Committee. While there are no sweeping changes to the charter, some of the changes may have you scratching your head. CFSAC … Continue reading →

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Why You Should P2P

Posted on September 8, 2014 by Jennie Spotila

My concerns about the NIH’s Pathways to Prevention Workshop on ME/CFS are legion, and I’ve been quite vocal about them. But today I am asking you to participate in the P2P Workshop on December 9-10, 2014. Registration for attending in … Continue reading →

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Burning Underground

Posted on September 3, 2014 by Jennie Spotila

Just over a year ago, advocate Leela Play noticed something odd on a federal contracting website. What she found was a notice of intent to award a sole source contract to the Institute of Medicine to create clinical diagnostic criteria … Continue reading →

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Turnover

Posted on August 27, 2014 by Jennie Spotila

Multiple sources have confirmed that Dr. Nancy Lee is stepping down as Designated Federal Officer of the CFS Advisory Committee. Also departing is her assistant DFO, Marty Bond. Dr. Lee was a lightning rod for criticism and controversy. During her … Continue reading →

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Renewal?

Posted on August 20, 2014 by Jennie Spotila

Will the CFS Advisory Committee be back this fall? Not many people seem to be paying attention to the fact that it could potentially disappear. The CFSAC is a chartered federal advisory committee, and by law it must be renewed … Continue reading →

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La La La, I Can’t Hear You

Posted on August 4, 2014 by Jennie Spotila

On May 28th, Mary Dimmock and I sent NIH Director Dr. Francis Collins a 38 page packet outlining our concerns that the P2P Workshop will not advance the ME/CFS research field, and may even set it back. We finally got … Continue reading →

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P2P: The Question They Will Not Ask

Posted on July 21, 2014 by Jennie Spotila

by Mary Dimmock and Jennie Spotila The most important question about ME/CFS – the question that is the cornerstone for every aspect of ME/CFS science – is the question that the P2P Workshop will not ask: How do ME and … Continue reading →

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Guest Post: Longtime Patient, New Advocate

Posted on June 30, 2014 by Jennie Spotila

I am very pleased to share this guest post from Darlene Prestwich in which she shares her experiences as a new(ish) advocate. I’ve been doing this so long, sometimes I forget what it was like to jump in the deep … Continue reading →

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