Tag Archives: testimony

Joint Request for Action

Posted on June 22, 2012 by Jennie Spotila

I joined in this effort by advocacy groups and individuals to secure a meaningful response to CFS from the Department of Health and Human Services. This letter was sent to Secretary Sibelius and others on June 5th. The coalition of … Continue reading →

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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 →

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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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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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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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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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