Tag Archives: pacing

Add Your Voice to the Call to Investigate PACE

Posted on November 18, 2015 by Jennie Spotila

(reprinted with permission) Twelve U.S. ME/CFS organizations have called on the Centers for Disease Control and Prevention (CDC) and Agency for Health Research & Quality (AHRQ) calling on them to investigate the PACE trial concerns outlined by David Tuller and … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , | 2 Comments

A Request That Should Not Be Ignored

Posted on November 13, 2015 by Jennie Spotila

Six scientists have sent a joint letter to the Editor of The Lancet asking for an independent re-analysis of the PACE trial data. The letter, published today on Virology Blog, is signed by Dr. Ron Davis (Stanford), Dr. Jonathan Edwards … Continue reading →

Posted in Commentary, Research | Tagged , , , , , , , , | 13 Comments

Draft Systematic Review is UP

Posted on September 22, 2014 by Jennie Spotila

The draft systematic evidence review on the Diagnosis and Treatment of ME/CFS has been published. This review is extraordinarily important because it is being presented to the P2P Panel in a closed door session any day now. This review will … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , , , , , , , , , , | 7 Comments

Limited Capacity

Posted on August 13, 2014 by Jennie Spotila

Life with ME/CFS is all about limits. Physical. Mental. Emotional. It’s like living in a glass box that remains far too small, no matter how much you practice acceptance or positive thinking. And the torture of it is that since … Continue reading →

Posted in Occupying | Tagged , , , , | 25 Comments

Guest Post: Longtime Patient, New Advocate

Posted on June 30, 2014 by Jennie Spotila

I am very pleased to share this guest post from Darlene Prestwich in which she shares her experiences as a new(ish) advocate. I’ve been doing this so long, sometimes I forget what it was like to jump in the deep … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , | 12 Comments

Data Queen

Posted on July 10, 2013 by Jennie Spotila

One of the biggest weapons I have in the fight against ME/CFS is data. I keep track of my activities, medications, sleep, and symptoms daily, and over time that data can be very powerful. I’ve blogged extensively about wearing a … Continue reading →

Posted in Occupying | Tagged , , , , | 11 Comments

Two Is Better Than One

Posted on July 3, 2013 by Jennie Spotila

My confidence in two-day cardiopulmonary exercise testing (CPET) is pretty obvious on this blog. A new study from ME/CFS experts Dr. Chris Snell, Staci Stevens, Dr. Todd Davenport, and Dr. Mark VanNess supplies hard data that shows how important a … Continue reading →

Posted in Research | Tagged , , , , , , , | 10 Comments

Heart Rate and Beta Blockers

Posted on July 2, 2013 by Jennie Spotila

Beta blockers are routinely prescribed to ME/CFS patients who have orthostatic intolerance. But because of the medication’s effects on heart rate, it can be challenging to incorporate heart rate monitoring into the picture. After some uncertainty, I have managed to … Continue reading →

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

Meeting METS

Posted on June 21, 2013 by Jennie Spotila

It has been more than a year since I had a two-day exercise test. My exercise test report was full of all kinds of jargon, and over the last year I have been trying to decode and apply it to … Continue reading →

Posted in Occupying | Tagged , , , , , , , | 6 Comments

Sometimes It’s One of Those Times

Posted on June 11, 2013 by Jennie Spotila

Sometimes, life just vomits in your lap. One thing after another goes wrong, and you feel like you’re juggling roaring chainsaws while pedaling a unicycle. Or maybe that’s just me. 2013 has been challenging, to say the least. I’m fully … Continue reading →

Posted in Occupying | Tagged , , , , , | 13 Comments