Category Archives: Advocacy

IOM Panel Announced

Posted on December 3, 2013 by Jennie Spotila

The Institute of Medicine has posted the provisional panel for public review and comment. I am working with a group of advocates to research all the members, seek out bias or conflicts of interest, and bring that information to you … Continue reading →

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Musical Chairs

Posted on December 2, 2013 by Jennie Spotila

Understanding the CFS Advisory Committee is not limited to what happens in the meetings. The paths that lead members to their seats at the table are very important too. Regular readers of this blog know that I’ve tracked the nomination … Continue reading →

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Which Disease Is HHS Studying?

Posted on November 27, 2013 by Jennie Spotila

I am very pleased to share space today with Mary Dimmock. She has written this guest post about which disease HHS has asked IOM to define. Her conclusion will probably increase any concerns you have about the IOM study. Mary … Continue reading →

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Nothing to See Here

Posted on November 25, 2013 by Jennie Spotila

After more than four months, Assistant Secretary Dr. Howard Koh has finally responded to our request for an investigation into the allegations that Dr. Nancy Lee attempted to intimidate at least two voting members of the CFS Advisory Committee. His … Continue reading →

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On The Record

Posted on November 22, 2013 by Jennie Spotila

Public comment for the CFS Advisory Committee is due next Friday, November 29th. That’s not much time to prepare and submit comments, but I believe that you should if at all possible (instructions are here). Here’s why: CFSAC and HHS … Continue reading →

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FAQchecking

Posted on November 18, 2013 by Jennie Spotila

So We Had Some Questions . . . For the last few weeks, there’s been a rumor that HHS might actually respond to questions about the Institute of Medicine study. PANDORA urged HHS to address specific questions about the contract … Continue reading →

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CFSAC Info

Posted on November 14, 2013 by Jennie Spotila

The CFS Advisory Committee meeting is less than a month away: December 10th and 11th. To help you prepare, I’ve collected basic information about the meeting. I’ll be posting more about what to watch for in the meeting soon. The … Continue reading →

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Quizzical

Posted on November 12, 2013 by Jennie Spotila

Update November 13, 2013: I have received a response from the CFIDS Association and have updated this post accordingly. Full comment from the Association below. My thanks to Carol Head, CEO of the CFIDS Association for her swift response to … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , | 15 Comments

IOM Conflict of Interest Policies

Posted on November 6, 2013 by Jennie Spotila

After my post on the basic process of an Institute of Medicine study, I received a number of questions in the comments and on Phoenix Rising about the definition of “conflict of interest” as distinguished from “bias.” I reached out … Continue reading →

Posted in Advocacy | Tagged , , , , , | 54 Comments

IOM Process Check

Posted on November 4, 2013 by Jennie Spotila

Controversies continue to swirl around the Institute of Medicine’s study to create a clinical case definition for ME/CFS. I have new information to share, as well as important information about the process IOM uses for its studies. In preparing this … Continue reading →

Posted in Advocacy | Tagged , , , , , | 38 Comments