Search Results for: p2p

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

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

Will the Real P2P Please Stand Up?

Posted on May 19, 2014 by Jennie Spotila

What is the purpose of the ME/CFS P2P meeting at NIH? You would think that we would know by now, since Assistant Secretary Dr. Howard Koh first announced the effort in October 2012. But to say the rhetoric has evolved … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , | 22 Comments

More on P2P

Posted on January 13, 2014 by Jennie Spotila

Robert Miller posted a statement on Facebook last night revealing that he was one of the members of the P2P Working Group that met at NIH last week. I’ve posted his full comment below, with his permission. Bob is very … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , | 21 Comments

The NIH Pilot Program: What We Can Do

Posted on May 28, 2018 by Jennie Spotila

As I discussed in Part One of the NIH Pilot Program, NIH thinks that the three (and only three) Collaborative Research Centers are seeds to generate interest in ME research, and will wait for more research applications to come in … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , , , , , , , , , | 18 Comments

The NIH Pilot Program: Wait and See

Posted on May 21, 2018 by Jennie Spotila

MEAction has collected thousands of signatures on a letter to Dr. Francis Collins, asking for a meeting with him and a plan of action to attack the ME public health crisis. That request is all the more urgent because NIH … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , , , , , , , | 50 Comments

Unrest: Movie Review

Posted on September 12, 2017 by Jennie Spotila

Spoiler alert: This review discusses some specific scenes from Unrest. Edited to add: No, really! There are SPOILERS here! If you want to see and experience the film with a blank slate, then go see the film and come back … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , , , , , , , , , , , , , , , | 15 Comments