Category Archives: Commentary

IOM Panelists: TL; DR

Posted on December 18, 2013 by Jennie Spotila

I realize that the past two weeks have been a veritable blog-alanche here at Occupy CFS. There’s been more research and writing here on the IOM ME/CFS panel than any other place online of which I am aware. I know … Continue reading →

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IOM Panelists: Balance = Experts + Information – Bias

Posted on December 16, 2013 by Jennie Spotila

The issue on everyone’s mind is whether the Institute of Medicine panel is the right group to come up with a new ME/CFS clinical case definition. Our team has been debating this for nearly two weeks now, and we have … Continue reading →

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IOM Panelists: Balancing Act

Posted on December 13, 2013 by Jennie Spotila

There is a good deal more to discuss about the Institute of Medicine ME/CFS case definition panelists beyond their individual backgrounds (see the known and unknown panelists’ profiles). Our team has been grappling with those issues, not always achieving consensus. … Continue reading →

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Jennie Spotila, CFSAC Testimony, December 2013

Posted on December 11, 2013 by Jennie Spotila

I submitted these comments in writing for the public record. However, given all that has transpired since then, I will not be delivering these remarks during my comment slot today. The relationship between ME/CFS advocates and the federal government has … Continue reading →

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IOM Panelists: The Knowns

Posted on December 7, 2013 by Jennie Spotila

In this post, we present profiles of the eight members of the Institute of Medicine ME/CFS definition panel who are known to the ME/CFS community in some capacity. Many, but not all, of them are ME/CFS experts in that they … Continue reading →

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IOM Panelists: The Unknowns

Posted on December 5, 2013 by Jennie Spotila

In this post, we present profiles of the seven members of the Institute of Medicine ME/CFS definition panel who were unknown to the ME/CFS community. You can read about the team who put this together and the methods we used … Continue reading →

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IOM Panelists: Method to Our Madness

Posted on December 5, 2013 by Jennie Spotila

My plan upon the announcement of the Institute of Medicine panel was to provide detailed write ups on all the members within 48 hours. Reality smacked me upside the head after about 24 hours. I am working with a wonderful … 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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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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