Tag Archives: CDC

IOM: Report Card

Posted on February 10, 2015 by Jennie Spotila

It’s here. A new case definition and a new name. It will take some time for me to get through the 300 page report and prepare a more detailed analysis. But based on the press conference and summary, how did … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , | 61 Comments

ME/CFS Mortality

Posted on July 7, 2014 by Jennie Spotila

Does ME/CFS kill? This critical question has received very little attention from researchers, but there is a way for you to help change that. The first paper on causes of death in ME/CFS was published in 2006 by Dr. Leonard … Continue reading →

Posted in Research | Tagged , , , , , , , , , , , | 23 Comments

Parsing CFSAC

Posted on June 24, 2014 by Jennie Spotila

I feel like a broken record, saying that the June 16-17th CFS Advisory Committee meeting was frustrating. This meeting struck me as a tangle of threads that can only be understood by teasing them apart. There were signals buried in … Continue reading →

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Guest Post: CFSAC Testimony of Andrew Bokelman

Posted on June 19, 2014 by Jennie Spotila

Andrew Bokelman was scheduled to deliver public comment to the CFS Advisory Committee on June 17th and was the first telephone commenter. His call was terminated by the operator prior to his 3 minutes being up. After protest on Andrew’s … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , | 5 Comments

Not So FOIA

Posted on March 17, 2014 by Jennie Spotila

The problems ME/CFS advocates are having with Freedom of Information Requests are swiftly acquiring epic proportions. Jeannette Burmeister filed a lawsuit this year to compel release of documents for one of her FOIA requests. Patricia Carter has also filed FOIA … 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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(Lack of) Progress Report

Posted on December 12, 2013 by Jennie Spotila

The December 2013 CFS Advisory Committee meeting was controversial before it began, and honestly things only went downhill from there. I don’t think I have it in me to list everything that was wrong with the meeting, and I’m pretty … 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 →

Posted in Advocacy | Tagged , , , , , , , , | 24 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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Opportunity Lost

Posted on September 10, 2013 by Jennie Spotila

The CDC hosted a conference call for ME/CFS patients and advocates today. The highlight of the call was a presentation from Dr. Ian Lipkin about his pathogen and immunology work in ME/CFS. But we received an important update on the … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , | 21 Comments