Tag Archives: priorities

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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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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ME/CFS Mortality

Posted on July 7, 2014 by Jennie Spotila

Does ME/CFS kill? This critical question has received very little attention from researchers, but there is a way for you to help change that. The first paper on causes of death in ME/CFS was published in 2006 by Dr. Leonard … Continue reading →

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Parsing CFSAC

Posted on June 24, 2014 by Jennie Spotila

I feel like a broken record, saying that the June 16-17th CFS Advisory Committee meeting was frustrating. This meeting struck me as a tangle of threads that can only be understood by teasing them apart. There were signals buried in … Continue reading →

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P2P: Taking Shape

Posted on June 20, 2014 by Jennie Spotila

The P2P ME/CFS Workshop has been approved and is scheduled for December 9-10th, 2014. The focus of this post is on analyzing four components of the information released by NIH yesterday: P2P is describing our disease as fatigue, without post-exertional … Continue reading →

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P2P Spin

Posted on June 12, 2014 by Jennie Spotila

Listen carefully to the agency updates at the June 16th CFS Advisory Committee meeting. Updates on the P2P Workshop and systematic evidence review may sound reasonable, but I suspect that hidden within will be some spin-doctoring to deflect our concerns … Continue reading →

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Just In: New CFSAC Members

Posted on June 6, 2014 by Jennie Spotila

New CFSAC members have been announced! Four members have been appointed, along with the announcement of the new chair. Two members are not new to us, or to CFSAC. Dr. Sue Levine and Dr. Dane Cook have both been given … Continue reading →

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P2P Agenda Fatigue

Posted on May 22, 2014 by Jennie Spotila

HHS officials have made confusing statements about the goals of the P2P Workshop, but I have obtained documents through FOIA that give us insight into the structure of the meeting. Two versions of the Workshop draft agenda strongly suggest that … Continue reading →

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