Tag Archives: speaking out

A Big Helping of Defamation

Posted on November 26, 2014 by Jennie Spotila

I’m going public with an incident that exposes the dirty underbelly of the ME/CFS community. It’s not the first time I’ve been personally targeted, and surely won’t be the last. But bullying and defamation directed at me, or any other … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , | 58 Comments

Another CFSAC Violation

Posted on November 24, 2014 by Jennie Spotila

Today I must report that once again, the CFS Advisory Committee violated federal law. This time, recommendations made by the Committee were illegally altered after the public meeting. The story of what happened, how I got it fixed (hopefully), and … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , | 32 Comments

CFSAC SNAFU

Posted on November 19, 2014 by Jennie Spotila

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 , , , , , , , , , | 13 Comments

P2P: Not This Science

Posted on November 17, 2014 by Jennie Spotila

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 , , , , , , , , , , , , , | 14 Comments

P2P Agenda: What the Huh?

Posted on October 31, 2014 by Jennie Spotila

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)

Posted on October 21, 2014 by Jennie Spotila

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

Posted on October 18, 2014 by Jennie Spotila

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

Posted on October 15, 2014 by Jennie Spotila

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)

Posted on October 6, 2014 by Jennie Spotila

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 →

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A Review of the P2P Systematic Review

Posted on September 29, 2014 by Jennie Spotila

The draft systematic evidence review on the Diagnosis and Treatment of ME/CFS was published online last week. It’s a monster – 416 pages in total. I know many ME/CFS patients may not be able to read this report, so in … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , | 44 Comments