Tag Archives: IOM

Accurate and Precise

Posted on January 27, 2014 by Jennie Spotila

This is the text version of my presentation to the Institute of Medicine Panel today. I delivered my comments remotely, because a fever has kept me bedridden for three days. I tried to speak as naturally and extemporaneously as possible, … Continue reading →

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At the Microphone

Posted on January 20, 2014 by Jennie Spotila

Next Monday, the IOM Panel creating new diagnostic criteria for ME/CFS will hold a public meeting. This may or may not be the only public meeting for the study, and it will be webcast. As you can see, I am … Continue reading →

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My Feedback to the Institute of Medicine

Posted on December 19, 2013 by Jennie Spotila

Today, I submitted the following letter to the Institute of Medicine with my feedback on the panel for the Diagnostic Criteria for ME/CFS. Seven other advocates signed the letter: Chris Heppner, Claudia Goodell, Joe Landson, Denise Lopez-Majano, Matina Nicholson, Darlene … Continue reading →

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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: Submitting Feedback

Posted on December 18, 2013 by Jennie Spotila

Feedback to the Institute of Medicine on the provisional committee appointments for the ME/CFS clinical definition study is due December 23rd. Not everyone in the advocacy community believes submitting feedback is appropriate. But if you wish to provide any input … 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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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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