Tag Archives: NIH

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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P2P: It’s Not Just Us

Posted on June 10, 2014 by Jennie Spotila

I’ve been asked if it is too late to send an email to Dr. Francis Collins about the P2P Workshop. Definitely NOT! In fact, there is now a super easy way to send that email through a page on ME … Continue reading →

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Tell Dr. Collins to Stop P2P

Posted on June 2, 2014 by Jennie Spotila

As I explain in this previous post, Mary Dimmock and I have sent a letter to Dr. Francis Collins requesting that he cancel the P2P Workshop and reexamine the best way to collaborate with the ME/CFS research and clinical community. … Continue reading →

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Collins: Please Cancel P2P

Posted on June 2, 2014 by Jennie Spotila

Last week, Mary Dimmock and I sent a letter to Dr. Francis Collins, Director of NIH, requesting that he cancel the P2P Workshop on ME/CFS and reexamine how to best collaborate with the ME/CFS research and clinical community. We offered … 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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Will the Real P2P Please Stand Up?

Posted on May 19, 2014 by Jennie Spotila

What is the purpose of the ME/CFS P2P meeting at NIH? You would think that we would know by now, since Assistant Secretary Dr. Howard Koh first announced the effort in October 2012. But to say the rhetoric has evolved … Continue reading →

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Protocol for Disaster?

Posted on May 2, 2014 by Jennie Spotila

The study protocol for the systematic review of ME/CFS was posted by the Agency for Healthcare and Research Quality yesterday. It’s a recipe for disaster on its own, and within the broader context of the NIH P2P Workshop it’s even … Continue reading →

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Research Roadmap

Posted on April 14, 2014 by Jennie Spotila

The Research Recruitment Working Group of the CFS Advisory Committee has been formulating recommendations that could potentially change the direction of ME/CFS research at NIH. Not much time has been spent on it at the last two meetings, but I … Continue reading →

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2013 NIH Spending on CFS Studies

Posted on March 31, 2014 by Jennie Spotila

Update: This post was revised on October 29, 2016 to correct mathematical errors and update the included research. I have positive news to report: NIH spending on ME/CFS  in 2013 was actually higher than it was in 2012. Are you … Continue reading →

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Not So FOIA

Posted on March 17, 2014 by Jennie Spotila

The problems ME/CFS advocates are having with Freedom of Information Requests are swiftly acquiring epic proportions. Jeannette Burmeister filed a lawsuit this year to compel release of documents for one of her FOIA requests. Patricia Carter has also filed FOIA … Continue reading →

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