Tag Archives: speaking out

Mary Dimmock: Fight the Power

Posted on September 25, 2014 by Jennie Spotila

The draft P2P evidence review report has been issued and we have all had a chance to see just how appallingly bad it is. Now the question is what to do next. Some have called for us to oppose P2P … Continue reading →

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NIH Says No, and Also No

Posted on September 23, 2014 by Jennie Spotila

With no announcement or fanfare, the CFS Advisory Committee has posted a response from HHS to the June 2014 recommendations. My information is that  – inexplicably – even CFSAC members were not notified when the response was posted. I urge … Continue reading →

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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 →

Posted in Advocacy | Tagged , , , , , , , , , , , , | 35 Comments

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 →

Posted in Advocacy, Commentary | Tagged , , , , , , , | 11 Comments

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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Limited Capacity

Posted on August 13, 2014 by Jennie Spotila

Life with ME/CFS is all about limits. Physical. Mental. Emotional. It’s like living in a glass box that remains far too small, no matter how much you practice acceptance or positive thinking. And the torture of it is that since … Continue reading →

Posted in Occupying | Tagged , , , , | 25 Comments

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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