Author Archives: Jennie Spotila

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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FITNET or Fairy Dust?

Posted on March 12, 2012 by Jennie Spotila

There has been much buzz in the CFS community over the latest CBT (cognitive behavioral therapy) study claiming astounding recovery rates in CFS. This time, the study is called FITNET, a test of internet-based CBT for adolescents with CFS in … Continue reading →

Posted in Commentary, Research | Tagged , , , , , | 5 Comments

Easy (Chick)Peasey

Posted on March 8, 2012 by Jennie Spotila

Once upon a time, there lived a young woman who was a foodie. She loved spending hours over a meal at the dearly departed Striped Bass. She also loved executing multi-course meals that used every pot and pan in the … Continue reading →

Posted in Occupying | Tagged , , , , , , | 4 Comments

App for That

Posted on March 6, 2012 by Jennie Spotila

Dr. Esther Crawley recently announced the availability of a new iPhone app for CFS patients: ActiveME. The app is designed to help patients monitor their activity levels with the goal of identifying “boom and bust” energy cycles. I decided 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

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 →

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Virtually Reality

Posted on February 23, 2012 by Jennie Spotila

Today, the CFIDS Association announces its latest research grants and projects. I know many of us want to dive into the details of the grants, but I want to first take a look at the big picture. The Association describes … Continue reading →

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

Diverse and Coordinated

Posted on February 23, 2012 by Jennie Spotila

Today, the CFIDS Association announced five new research grants as part of its “institute without walls” CFS research program.* The Association has funded more CFS research than any other non-profit to date, and expectations are high following on the success … 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 →

Posted in Advocacy, Commentary | Tagged , , , , | 5 Comments