Tag Archives: case definition

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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IOM: Sum of the Whole Matter

Posted on May 10, 2014 by Jennie Spotila

The IOM panel on ME/CFS held its second (and likely final) public meeting on May 5, 2014. On display near the meeting room was this painting by Robert Van Vranken: Untitled (Everything at once, or one thing at a time?). … 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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Don’t Silence Yourself

Posted on April 8, 2014 by Jennie Spotila

On May 5th, the IOM panel creating new diagnostic criteria for ME/CFS will hold its second public meeting. The only way you can provide input is by submitting written comments, unless you are an invited speaker. I’m here to plead … Continue reading →

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Reading Tea Leaves

Posted on March 24, 2014 by Jennie Spotila

In a report issued on March 12, the IOM panel tasked with creating a new case definition for Gulf War Illness declined to do so. This is the first time the IOM was attempting to create a disease case definition, … Continue reading →

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Changing Tactics

Posted on March 24, 2014 by Jennie Spotila

For decades, ME/CFS research and clinical care has been plagued by disagreement over the basic classification of the illness. Is ME/CFS a physical disease, as many patients and researchers insist? Or is it a mental health disorder perpetuated by deconditioning, … Continue reading →

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Silver Platter of Frustration

Posted on March 12, 2014 by Jennie Spotila

Yesterday’s CFS Advisory Committee meeting was insane. Wait, maybe the meeting just drove me insane. Or was the whole thing just insanely inane? I don’t even know anymore. Wait a second, hang on. Ok, let me start again. Yesterday’s CFS … Continue reading →

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