Tag Archives: government

CFSAC Takeaways

Posted on June 18, 2012 by Jennie Spotila

I won’t attempt a comprehensive writeup of the recent CFS Advisory Committee meeting. This meeting was one of the most thoroughly covered: on Twitter (#CFSAC), real-time reports from Phoenix Rising, and a writeup by Tina Tidmore. Instead, I offer comments … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , | 9 Comments

XMRumorsV

Posted on June 15, 2012 by Jennie Spotila

Rumors about the Lipkin study are flying fast and furious these days. We’ve been hearing for months that the study results would be made public this year, but “news” of specific dates has kicked things into a frenzy. In April, … Continue reading →

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

“Keep Track. Keep Asking.”

Posted on June 14, 2012 by Jennie Spotila

This is the public comment I delivered by telephone to the CFS Advisory Committee today. Thank you to Cort Johnson for representing me at the speaker’s table, since I am too ill to be with you in person. I am … Continue reading →

Posted in Advocacy | Tagged , , , | 11 Comments

CFSAC Comments from Dr. Lily Chu

Posted on June 13, 2012 by Jennie Spotila

Dr. Lily Chu submitted these written comments to the CFS Advisory Committee for its June 2012 meeting. She has kindly given me permission to publish them here. Dear Sirs and Mesdames, Thank you for this opportunity to address official and … Continue reading →

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

Watch This!

Posted on June 11, 2012 by Jennie Spotila

There is something very simple, and very important, that you can do: Watch the CFS Advisory Committee meeting on June 13th and 14th. Why does it matter? In 2009, the CFSAC began videocasting its meetings. Viewership for the meetings was … Continue reading →

Posted in Advocacy | Tagged , , | 3 Comments

CFSAC Basic Facts

Posted on June 8, 2012 by Jennie Spotila

The first 2012 meeting of the CFS Advisory Committee is June 13-14th. While the patient community focuses on the opportunity for public comment, I think it is also important to understand how the committee functions. We have to understand the … Continue reading →

Posted in Advocacy | Tagged , , , | 1 Comment

Deal With It

Posted on May 24, 2012 by Jennie Spotila

The CFS Advisory Committee will hold its next meeting on June 13-14th. This is the text of the public comment I offered at the previous meeting on October 25, 2011.   I ask the voting members of this committee: do … Continue reading →

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Small Claims

Posted on May 8, 2012 by Jennie Spotila

In April, the FDA sent a warning letter to Dr. Jacob Teitelbaum regarding claims made on his website. Dr. Teitelbaum is well-known in the CFS world for several reasons. His book, From Fatigued to Fantastic, is the top-selling book in … Continue reading →

Posted in Commentary | Tagged , , , , , , | 3 Comments

The Holy Grail

Posted on March 1, 2012 by Jennie Spotila

Many CFS patients are holding their breath awaiting the results of the multiple lab XMRV study, nicknamed the Lipkin study after its coordinator Dr. Ian Lipkin of the Center for Infection and Immunity. I am not one of them.  I … Continue reading →

Posted in Commentary, Research | Tagged , , , , , | 13 Comments

I Think I Can

Posted on February 27, 2012 by Jennie Spotila

Today I am feeling like the Little Engine That Almost Can. I’ve been drafting a post about the Lipkin XMRV study, and my own views on whether it should be completed. After much work, and several thousand words, I’m out … Continue reading →

Posted in Commentary, Research | Tagged , , , , | 2 Comments