Category Archives: Advocacy

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 →

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“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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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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Be Aware

Posted on May 12, 2012 by Jennie Spotila

Today is ME/CFS Awareness Day. Why May 12th? It is the birthday of Florence Nightingale, who became bedridden with an illness resembling ME/CFS after the Crimean War. From 1860 to her death in 1910, Nightingale continued to work for the … Continue reading →

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Speak Up About ME

Posted on February 21, 2012 by Jennie Spotila

I have devoted substantial energy in the last several years to following the work of, and preparing testimony to, the CFS Advisory Committee to the Department of Health and Human Services. The committee exists to advise the Department on CFS … Continue reading →

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Not Just Us

Posted on February 15, 2012 by Jennie Spotila

The Senate Health, Education, Labor & Pension Committee hearing on Pain in America (read a summary here  or watch the hearing here) made me realize something: it is not just the CFS community that has to struggle against psychogenic arguments … Continue reading →

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Testimony to Hearing on Chronic Pain

Posted on February 14, 2012 by Jennie Spotila

Today, the Senate Committee on Health, Education, Labor & Pensions is holding a hearing on chronic pain. This hearing came about through the work of the Chronic Pain Research Alliance.  I was invited to provide written testimony to the hearing … Continue reading →

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