Author Archives: Jennie Spotila

CFSAC SNAFU

We’ve known about the CFS Advisory Committee meeting on December 3rd and 4th for awhile, but yesterday the details came out about the agenda and public comment. Judging from the advocates I’ve talked to, it’s not going over well. If … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , | 9 Comments

P2P: Not This Science

The P2P Workshop agenda focuses on a few broad categories of ME/CFS research: characteristics of the ME/CFS population; fostering innovative research; presentation and diagnosis in clinic; and, tools and measures for diagnosis and outcomes. Yet even with the late addition … Continue reading

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

P2P and Dr. Francis Collins

On January 3, 2014, just three days before the P2P Working Group meeting, a troubling series of emails was exchanged among NIH leadership. These emails show confusion at the leadership level about the ME/CFS P2P and IOM efforts, and a … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , , | 26 Comments

P2P: The Disinvite List

UPDATED November 10 11, 2014 (see below) Last week, I focused on the problematic choice of several speakers for the P2P Workshop. Today, we’re going to focus on the speakers who were NOT invited to the Workshop. How do I … Continue reading

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

Delay

I have been laid low by an infection, and now by the antibiotics I’m taking to treat the infection. So it will be a few days before I post the next few entries on P2P – but stay tuned because … Continue reading

Posted in Occupying | Tagged , , , | 1 Comment

P2P Agenda: What the Huh?

Less than six weeks from the NIH P2P Workshop on ME/CFS, and we now have an agenda with speakers and talk titles.  So is it good or bad? I reached out to the six ME/CFS members of the Working Groups … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 49 Comments

Illness Beliefs (or Why I Am Not an ME/CFS Activist)

Today, Joe Landson shares his thoughts on how the false illness beliefs (or even cognitive bias) among scientists is holding our field back. Joe says it is time to tear down the walls and think horizontally – to the horizon, … Continue reading

Posted in Commentary | Tagged , , , , , , , | 9 Comments

Comments on P2P Systematic Evidence Review

After four weeks of intense work, a group of advocates has submitted forty pages of comments on the P2P systematic evidence review. We published a summary of our comments last week. If you want to read the full document, you … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , , , , , | 25 Comments

Evidence Review Comments Preview

This post comes via Mary Dimmock, Claudia Goodell, Denise Lopez-Majano, and myself. You are welcome to publish it on your site with attribution and a link back to this post. You are also welcome to use this (and other material … Continue reading

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , , , | 24 Comments

They Know What They’re Doing (Not)

This post comes via Mary Dimmock, with assistance from Claudia Goodell, Denise Lopez-Majano, and myself. You are welcome to publish it on your site with attribution to Mary Dimmock.   Last week, Jennie Spotila and Erica Verillo posted summaries of … Continue reading

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