Tag Archives: AHRQ

Those CDC Documents

Posted on August 4, 2017 by Jennie Spotila

Last month, I wrote about CDC wanting to charge me over $200 for documents I had requested under the Freedom of Information Act. I was looking for information on how much CDC had spent on the Institute of Medicine (now … Continue reading →

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PACE: Grossly Exaggerated

Posted on September 21, 2016 by Jennie Spotila

On September 9, 2016, Queen Mary University of London released data from the PACE trial in compliance with a First Tier Tribunal decision on a Freedom of Information Request by ME patient Alem Matthees. The day before, the PACE authors … Continue reading →

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AHRQ Evidence Review Changes Its Conclusions

Posted on August 16, 2016 by Jennie Spotila

Mary Dimmock has led the way on this issue, and is co-author of this post. In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its … Continue reading →

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Scandal

Posted on July 10, 2016 by Jennie Spotila

Give me 90 minutes. Whoever you are, whatever your connection to or interest in ME/CFS, take 90 minutes to listen to this discussion with academic/journalist David Tuller, DrPH (Lecturer at the School of Public Health and Graduate School of Journalism … Continue reading →

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PACE-Gate

Posted on May 12, 2016 by Jennie Spotila

It is International ME/CFS Awareness Day, and what is most on my mind is the status of PACE-Gate: the controversy over the design, conduct and results of the PACE trial. PACE is the largest clinical trial in ME/CFS, and it … Continue reading →

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Add Your Voice to the Call to Investigate PACE

Posted on November 18, 2015 by Jennie Spotila

(reprinted with permission) Twelve U.S. ME/CFS organizations have called on the Centers for Disease Control and Prevention (CDC) and Agency for Health Research & Quality (AHRQ) calling on them to investigate the PACE trial concerns outlined by David Tuller and … Continue reading →

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Showing the Back of Their Heads

Posted on June 22, 2015 by Jennie Spotila

The final P2P report is published, and now it’s time to evaluate the quality of the recommendations and how well the process served ME/CFS patients. There are many good things in the P2P report, and I’ll be focusing on those … Continue reading →

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The Oxford Problem

Posted on December 8, 2014 by Jennie Spotila

Today, I’m very pleased to share this guest post by Chris Heppner. I loved Oxford when there as undergraduate (1951-4)–truly a city of dreaming spires, peaceful libraries, walks in the country to a lovely old pub by a waterfall with … Continue reading →

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Comments on P2P Systematic Evidence Review

Posted on October 18, 2014 by Jennie Spotila

After four weeks of intense work, a group of advocates has submitted forty pages of comments on the P2P systematic evidence review. We published a summary of our comments last week. If you want to read the full document, you … Continue reading →

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Evidence Review Comments Preview

Posted on October 15, 2014 by Jennie Spotila

This post comes via Mary Dimmock, Claudia Goodell, Denise Lopez-Majano, and myself. You are welcome to publish it on your site with attribution and a link back to this post. You are also welcome to use this (and other material … Continue reading →

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