Tag Archives: DHHS

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

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 →

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

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 →

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

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 →

Posted in Advocacy | Tagged , , , , , , , , , , , | 14 Comments

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 →

Posted in Advocacy | Tagged , , , , , , , , , , | 3 Comments

Just In: New CFSAC Members

Posted on June 6, 2014 by Jennie Spotila

New CFSAC members have been announced! Four members have been appointed, along with the announcement of the new chair. Two members are not new to us, or to CFSAC. Dr. Sue Levine and Dr. Dane Cook have both been given … Continue reading →

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

A Different CFSAC

Posted on June 5, 2014 by Jennie Spotila

It’s that time again: meaning it is time for another CFS Advisory Committee meeting. Due to the make up day in March, the meetings have fallen very close together. Presumably this spring meeting puts the calendar back on track (but … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , | Comments Off on A Different CFSAC

Tell Dr. Collins to Stop P2P

Posted on June 2, 2014 by Jennie Spotila

As I explain in this previous post, Mary Dimmock and I have sent a letter to Dr. Francis Collins requesting that he cancel the P2P Workshop and reexamine the best way to collaborate with the ME/CFS research and clinical community. … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , | 20 Comments

Collins: Please Cancel P2P

Posted on June 2, 2014 by Jennie Spotila

Last week, Mary Dimmock and I sent a letter to Dr. Francis Collins, Director of NIH, requesting that he cancel the P2P Workshop on ME/CFS and reexamine how to best collaborate with the ME/CFS research and clinical community. We offered … Continue reading →

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

P2P Agenda Fatigue

Posted on May 22, 2014 by Jennie Spotila

HHS officials have made confusing statements about the goals of the P2P Workshop, but I have obtained documents through FOIA that give us insight into the structure of the meeting. Two versions of the Workshop draft agenda strongly suggest that … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , | 20 Comments