Monthly Archives: June 2014

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 →

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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 →

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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 →

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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 →

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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 →

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Comment for the June 2014 CFS Advisory Committee

Posted on June 17, 2014 by Jennie Spotila

These are the comments I delivered by telephone to the CFS Advisory Committee today. For the record, the operator told me that they were instructed to cut people off precisely at 3 minutes. Mary Dimmock and I wrote to Dr. … Continue reading →

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Guest Post: CFSAC Comments of Joe Landson

Posted on June 16, 2014 by Jennie Spotila

Joe Landson delivered these comments at the CFS Advisory Committee meeting today. He has kindly given me permission to post them in their entirety here. Testimony of Joseph D. Landson June 2014 Chronic Fatigue Syndrome Advisory Committee First, credit where … Continue reading →

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P2P Spin

Posted on June 12, 2014 by Jennie Spotila

Listen carefully to the agency updates at the June 16th CFS Advisory Committee meeting. Updates on the P2P Workshop and systematic evidence review may sound reasonable, but I suspect that hidden within will be some spin-doctoring to deflect our concerns … Continue reading →

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P2P: It’s Not Just Us

Posted on June 10, 2014 by Jennie Spotila

I’ve been asked if it is too late to send an email to Dr. Francis Collins about the P2P Workshop. Definitely NOT! In fact, there is now a super easy way to send that email through a page on ME … Continue reading →

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Twitter Chat

Posted on June 8, 2014 by Jennie Spotila

I will be guest hosting a WEGO Health Twitter chat on Tuesday, June 10th from 3 to 4pm Eastern time. I chose the topic of advocating for yourself when you have a stigmatized chronic disease. What’s a Twitter chat? Twitter … Continue reading →

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