Author Archives: Jennie Spotila

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 →

Posted in Advocacy, Commentary | Tagged , , , , , , , , | 24 Comments

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 →

Posted in Advocacy, Commentary | Tagged , , , , , , , | 34 Comments

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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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 →

Posted in Advocacy | Tagged , , , | 34 Comments

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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Giving Thanks

Posted on November 30, 2013 by Jennie Spotila

November has become a gratitude month in the US, with Thanksgiving happening this week. Last year, I posted a list of ME/CFS related things I was grateful for, and I think it might be a healthy tradition to maintain. I … Continue reading →

Posted in Occupying | Tagged , , , , , , | 8 Comments

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 →

Posted in Advocacy | Tagged , , , , , , , , , | 26 Comments

WEGO Best in Show Nomination

Posted on November 20, 2013 by Jennie Spotila

I am honored to have been nominated for a WEGO Health Activist award in the Best in Show: Blog category! You can see my profile page, and endorse the nomination if you are so inclined, here. To create my profile … Continue reading →

Posted in Occupying | Tagged , , , | 17 Comments