Tag Archives: profile

Laura Hillenbrand is Not Your Bitch*

Laura Hillenbrand is a New York Times best selling author, and one of the most prominent public figures to speak out about having ME/CFS. She has donated hundreds of thousands of dollars to ME/CFS research, has discussed her struggles with … Continue reading

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

My Feedback to the Institute of Medicine

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

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

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

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

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

IOM Panelists: The Knowns

In this post, we present profiles of the eight members of the Institute of Medicine ME/CFS definition panel who are known to the ME/CFS community in some capacity. Many, but not all, of them are ME/CFS experts in that they … Continue reading

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

IOM Panelists: The Unknowns

In this post, we present profiles of the seven members of the Institute of Medicine ME/CFS definition panel who were unknown to the ME/CFS community. You can read about the team who put this together and the methods we used … Continue reading

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

CFSAC Profile: Dr. Gary Kaplan

The CFS Advisory Committee announced via its listserv on October 23, 2013 that Dr. Gary Kaplan has been appointed to the Committee. Kaplan brings an interesting point of view to the Committee, but advocates have reason to be concerned about … Continue reading

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

CFSAC Interviews

Gabby Klein has written an article for Phoenix Rising that features interviews with CFS Advisory Committee members Dr. Gailen Marshall and Dr. Susan Levine, and non-voting members Dr. Kenneth Friedman, Leigh Reynolds and Dr. Fred Friedberg. It’s an interesting read, … Continue reading

Posted in Advocacy | Tagged , , , , , | Comments Off on CFSAC Interviews