Tag Archives: politics

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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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 →

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Disaster Voyeurism

Posted on March 16, 2012 by Jennie Spotila

I believe in bearing witness. In many ways, that’s what Occupy CFS is about. Everyone suffers in this life, but bearing witness to another person’s suffering is a sacred act. To bear witness is to absorb the sufferer’s story, to … Continue reading →

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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

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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Why Occupy

Posted on February 12, 2012 by Jennie Spotila

“I came because by being physically present at Occupy Wall Street, I could increase, however marginally, the likelihood that more people would look in my direction.” – Jason Fitzgerald If you paid any attention to the news in the last … Continue reading →

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