Author Archives: Jennie Spotila

CFSAC Testimony of Matthew Lazell-Fairman

Posted on June 21, 2012 by Jennie Spotila

Matthew Lazell-Fairman delivered these comments to the CFS Advisory Committee at its June 14, 2012 meeting. He has kindly given me permission to publish them here. To those responsible for health policy on ME/CFS, I need you to listen and … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , | 2 Comments

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 →

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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 →

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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 →

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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 →

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Abstract Risk

Posted on June 6, 2012 by Jennie Spotila

I posted about the cancer and CFS study last week based on the abstract only. Now I have a copy of the full paper, and there is much more to discuss. Dr. Suzanne Vernon also wrote about the study, so … Continue reading →

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

Cancer Risk

Posted on June 1, 2012 by Jennie Spotila

A study published online today found that CFS patients have a higher risk of developing certain kinds of cancer. I cannot get full access to the study (curse you, paywall!), so this post is based only on the abstract. The … Continue reading →

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Raising the Limit

Posted on May 29, 2012 by Jennie Spotila

I feel like I am getting close to baseline, the state I was in prior to the exercise testing. It’s taken almost seven weeks, and in that time I have left my house a total of seven times – 5 … Continue reading →

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