Tag Archives: CFIDS Association

This Week in Virology Covers ME/CFS

Posted on March 29, 2015 by Jennie Spotila

You may remember This Week in Virology (TWiV) from their XMRV coverage several years ago. I’ve remained an avid listener of the show, simply because it is such a great ongoing conversation about science. And TWiV has continued its coverage … 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

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 →

Posted in Advocacy, Commentary | Tagged , , , , , , , , | 19 Comments

Quizzical

Posted on November 12, 2013 by Jennie Spotila

Update November 13, 2013: I have received a response from the CFIDS Association and have updated this post accordingly. Full comment from the Association below. My thanks to Carol Head, CEO of the CFIDS Association for her swift response to … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , | 15 Comments

Convergence

Posted on October 10, 2013 by Jennie Spotila

In the last two weeks, position statements on the IOM and ME/CFS case definitions have been outnumbered only by rumors and allegations. I’ve had trouble keeping up and I am immersed in this issue. I can’t imagine how challenging it … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 45 Comments

Directional Signs

Posted on August 26, 2013 by Jennie Spotila

Last week, the CFIDS Association announced the formation of a Research Advisory Council and its newly appointed members. A close look at the roster reveals some interesting signs about the direction the Association may be headed, and it may surprise … Continue reading →

Posted in Research | Tagged , , , , , | 7 Comments

CFSAC Interviews

Posted on August 20, 2013 by Jennie Spotila

Gabby Klein has written an article for Phoenix Rising that features interviews with CFS Advisory Committee members Dr. Gailen Marshall and Dr. Susan Levine, and non-voting members Dr. Kenneth Friedman, Leigh Reynolds and Dr. Fred Friedberg. It’s an interesting read, … Continue reading →

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Need to Reality

Posted on August 5, 2013 by Jennie Spotila

One of the key moments of the April FDA meeting on drug development for ME/CFS was when Bernard Munos said that ME/CFS patients will have to collect and pool their data to attract the interest of big pharma. Many advocates … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , | 7 Comments

Drug and FDA News, May 2013

Posted on May 30, 2013 by Jennie Spotila

Yesterday, the CFIDS Association formally announced what had been rumored to be on the way: they are preparing to file an Investigational New Drug application. The first step will be a pre-IND meeting with FDA. This kind of meeting is … Continue reading →

Posted in Research | Tagged , , , , , , , | 4 Comments

Start as You Mean to Go On

Posted on April 25, 2013 by Jennie Spotila

I’m not sure which way to describe the ME/CFS community reaction to the announcement that Kim McCleary will be leaving the CFIDS Association: that people were so stunned you could hear a pin drop or that the news was the … Continue reading →

Posted in Commentary | Tagged , , , , , | 11 Comments