Author Archives: Jennie Spotila

While We Wait

Still waiting for exercise test results. Still waiting for recovery from exercise tests. Still waiting for the brain power to research and write some in depth blog posts I’ve been planning. But life doesn’t give us many breaks, so cue … Continue reading

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

Stressin’ and Testin’

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

  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

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

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

FITNET or Fairy Dust?

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

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

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

The Holy Grail

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

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