Category Archives: Advocacy

At the Microphone

Posted on January 20, 2014 by Jennie Spotila

Next Monday, the IOM Panel creating new diagnostic criteria for ME/CFS will hold a public meeting. This may or may not be the only public meeting for the study, and it will be webcast. As you can see, I am … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 85 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

Behind Closed Doors

Posted on January 6, 2014 by Jennie Spotila

There’s an important meeting happening at NIH today and tomorrow, but you probably know nothing about it. The secrecy of this meeting is intentional, and the implications of decisions made at the meeting are as far-reaching as the Institute of … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , | 51 Comments

My Feedback to the Institute of Medicine

Posted on December 19, 2013 by Jennie Spotila

Today, I submitted the following letter to the Institute of Medicine with my feedback on the panel for the Diagnostic Criteria for ME/CFS. Seven other advocates signed the letter: Chris Heppner, Claudia Goodell, Joe Landson, Denise Lopez-Majano, Matina Nicholson, Darlene … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , | 34 Comments

IOM Panelists: TL; DR

Posted on December 18, 2013 by Jennie Spotila

I realize that the past two weeks have been a veritable blog-alanche here at Occupy CFS. There’s been more research and writing here on the IOM ME/CFS panel than any other place online of which I am aware. I know … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , | 8 Comments

IOM Panelists: Submitting Feedback

Posted on December 18, 2013 by Jennie Spotila

Feedback to the Institute of Medicine on the provisional committee appointments for the ME/CFS clinical definition study is due December 23rd. Not everyone in the advocacy community believes submitting feedback is appropriate. But if you wish to provide any input … Continue reading →

Posted in Advocacy | Tagged , , , , , , | Comments Off on IOM Panelists: Submitting Feedback

IOM Panelists: Balance = Experts + Information – Bias

Posted on December 16, 2013 by Jennie Spotila

The issue on everyone’s mind is whether the Institute of Medicine panel is the right group to come up with a new ME/CFS clinical case definition. Our team has been debating this for nearly two weeks now, and we have … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , | 16 Comments

IOM Panelists: Balancing Act

Posted on December 13, 2013 by Jennie Spotila

There is a good deal more to discuss about the Institute of Medicine ME/CFS case definition panelists beyond their individual backgrounds (see the known and unknown panelists’ profiles). Our team has been grappling with those issues, not always achieving consensus. … Continue reading →

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

(Lack of) Progress Report

Posted on December 12, 2013 by Jennie Spotila

The December 2013 CFS Advisory Committee meeting was controversial before it began, and honestly things only went downhill from there. I don’t think I have it in me to list everything that was wrong with the meeting, and I’m pretty … Continue reading →

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

Ess, CFSAC Testimony, December 2013

Posted on December 12, 2013 by Jennie Spotila

Ess submitted anonymous written comments for the public record. I’m happy to publish her comments in their entirety, using her screen name with her permission. Introduction Thank you very much for this most important opportunity to add written comments to … Continue reading →

Posted in Advocacy | Tagged , , , , , | 8 Comments