Tag Archives: living with

Stressin’ and Testin’

Posted on April 19, 2012 by Jennie Spotila

Exercise testing for CFS is like professional boxing: you know you’ll get the crap beaten out of you, but you volunteer for it anyway. The difference is that in boxing, you get paid. In CFS exercise testing, you just hope … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , | 5 Comments

Some Life in Me Yet

Posted on April 8, 2012 by Jennie Spotila

  Being housebound changes a person. These four walls have become the boundaries of my whole world. I rely on books and the internet to remind me that there is more to life than this. My imagination can escape, even … Continue reading →

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

Tips for a CFS Vacation

Posted on April 3, 2012 by Jennie Spotila

My husband and I were fortunate enough to take a vacation to New Orleans last month, and I am still recovering. But I did want to share what I learned (or re-learned) on this trip about traveling with CFS. I … Continue reading →

Posted in Occupying | Tagged , , , , , , , | 9 Comments

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 →

Posted in Commentary | Tagged , , , , , , | 1 Comment

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 →

Posted in Commentary | Tagged , , | 9 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 →

Posted in Commentary, Research | Tagged , , , , | 2 Comments

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 →

Posted in Advocacy | Tagged , , , , | 4 Comments