Category Archives: Advocacy

CFSAC Profile: Dr. Gary Kaplan

Posted on October 25, 2013 by Jennie Spotila

The CFS Advisory Committee announced via its listserv on October 23, 2013 that Dr. Gary Kaplan has been appointed to the Committee. Kaplan brings an interesting point of view to the Committee, but advocates have reason to be concerned about … Continue reading →

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Don’t Lose Sight of CFSAC

Posted on October 22, 2013 by Jennie Spotila

The IOM controversy and the government shut down have been distracting, but CFS Advisory Committee deadlines are fast approaching. The CFSAC meeting is just three weeks away – November 12-13th – which means that public comment will be due soon, … Continue reading →

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Exhibit A

Posted on October 17, 2013 by Jennie Spotila

I’ve been very critical of HHS and how they have handled communications and engagement with the ME/CFS patient community, and the fiasco surrounding the Institute of Medicine study is a sinkhole of terrible engagement. But if HHS and/or the IOM … Continue reading →

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Which Paddle?

Posted on October 11, 2013 by Jennie Spotila

The IOM study is moving forward, and fast. I can confirm through multiple sources that the IOM has reached out to multiple ME/CFS organizations for nominations to the clinical case definition committee. Those nominations are due today. I can also … Continue reading →

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Convergence

Posted on October 10, 2013 by Jennie Spotila

In the last two weeks, position statements on the IOM and ME/CFS case definitions have been outnumbered only by rumors and allegations. I’ve had trouble keeping up and I am immersed in this issue. I can’t imagine how challenging it … Continue reading →

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Training Wheels

Posted on October 8, 2013 by Jennie Spotila

When the news about the IOM contract first broke on August 27th, I was at my training for FDA Patient Representatives. Here is my much delayed write-up of that training. Every year, the FDA Patient Representative Program holds an in-person … Continue reading →

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The Statement of Work

Posted on September 30, 2013 by Jennie Spotila

I have obtained a copy of the Statement of Work (SOW) for the Institute of Medicine study on clinical diagnostic criteria for ME/CFS. I am making that document available to you in its entirety through this link. I am also … Continue reading →

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The Experts

Posted on September 24, 2013 by Jennie Spotila

Developments came fast and furious last night. First, the CFIDS Association announced that it would not oppose the IOM contract, but would actively call for the IOM to choose a panel that matches the CFS Advisory Committee recommendation from October … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , | 31 Comments

Contract Signed

Posted on September 23, 2013 by Jennie Spotila

This message was sent out via the CFS Advisory Committee listserv this evening: We are pleased to announce that the Institute of Medicine (IOM) will begin conducting a study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome this month.  This … Continue reading →

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Lips Are Sealed

Posted on September 21, 2013 by Jennie Spotila

Whatever happened to that investigation we requested after the last CFS Advisory Committee meeting? Good question. You may recall that at the May 2013 CFSAC meeting, voting member Eileen Holderman alleged that she and two other members had been intimidated … Continue reading →

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