Author Archives: Jennie Spotila

Renewal?

Posted on August 20, 2014 by Jennie Spotila

Will the CFS Advisory Committee be back this fall? Not many people seem to be paying attention to the fact that it could potentially disappear. The CFSAC is a chartered federal advisory committee, and by law it must be renewed … Continue reading →

Posted in Advocacy | Tagged , , , , , | 13 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

La La La, I Can’t Hear You

Posted on August 4, 2014 by Jennie Spotila

On May 28th, Mary Dimmock and I sent NIH Director Dr. Francis Collins a 38 page packet outlining our concerns that the P2P Workshop will not advance the ME/CFS research field, and may even set it back. We finally got … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , | 19 Comments

IV Saline: Magic Juice

Posted on July 28, 2014 by Jennie Spotila

Back in March, I started an experiment with IV saline. Four months in, I have learned a lot about how and when the treatment helps me. IV saline has been used to treat orthostatic intolerance for many years*, and some … Continue reading →

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

P2P: The Question They Will Not Ask

Posted on July 21, 2014 by Jennie Spotila

by Mary Dimmock and Jennie Spotila The most important question about ME/CFS – the question that is the cornerstone for every aspect of ME/CFS science – is the question that the P2P Workshop will not ask: How do ME and … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , | 38 Comments

ME/CFS Mortality

Posted on July 7, 2014 by Jennie Spotila

Does ME/CFS kill? This critical question has received very little attention from researchers, but there is a way for you to help change that. The first paper on causes of death in ME/CFS was published in 2006 by Dr. Leonard … Continue reading →

Posted in Research | Tagged , , , , , , , , , , , | 23 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

Parsing CFSAC

Posted on June 24, 2014 by Jennie Spotila

I feel like a broken record, saying that the June 16-17th CFS Advisory Committee meeting was frustrating. This meeting struck me as a tangle of threads that can only be understood by teasing them apart. There were signals buried in … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , | 17 Comments

P2P: Taking Shape

Posted on June 20, 2014 by Jennie Spotila

The P2P ME/CFS Workshop has been approved and is scheduled for December 9-10th, 2014. The focus of this post is on analyzing four components of the information released by NIH yesterday: P2P is describing our disease as fatigue, without post-exertional … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , | 13 Comments

Guest Post: CFSAC Testimony of Andrew Bokelman

Posted on June 19, 2014 by Jennie Spotila

Andrew Bokelman was scheduled to deliver public comment to the CFS Advisory Committee on June 17th and was the first telephone commenter. His call was terminated by the operator prior to his 3 minutes being up. After protest on Andrew’s … Continue reading →

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