Tag Archives: occupy

Burning Underground

Posted on September 3, 2014 by Jennie Spotila

Just over a year ago, advocate Leela Play noticed something odd on a federal contracting website. What she found was a notice of intent to award a sole source contract to the Institute of Medicine to create clinical diagnostic criteria … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , | 11 Comments

Turnover

Posted on August 27, 2014 by Jennie Spotila

Multiple sources have confirmed that Dr. Nancy Lee is stepping down as Designated Federal Officer of the CFS Advisory Committee. Also departing is her assistant DFO, Marty Bond. Dr. Lee was a lightning rod for criticism and controversy. During her … Continue reading →

Posted in Advocacy | Tagged , , , , , , | 6 Comments

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

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

Guest Post: CFSAC Comments of Charmian Proskauer

Posted on June 17, 2014 by Jennie Spotila

Charmian delivered these comments at today’s CFS Advisory Committee meeting. She has kindly given me permission to publish them here in their entirety. My name is Charmian Proskauer, and I currently serve as President of the Massachusetts CFIDS/ME & FM … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , | 1 Comment