Tag Archives: occupy

The Burial of ME

Posted on May 8, 2015 by Jennie Spotila

Mary Dimmock has published an extraordinary review of the last thirty years of ME history. With her permission, I’ve reported her announcement with the link to the full document below. I highly recommend reading as much of this document as … Continue reading →

Posted in Advocacy, Commentary, Occupying, Research | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , | 14 Comments

Awareness Reboot

Posted on May 5, 2015 by Jennie Spotila

Today’s post comes from Denise Lopez-Majano. She makes a powerful argument for the kind of awareness campaign we need. The release of the Institute of Medicine report resulted in an unprecedented amount of media coverage and public discussion. As has … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , | 30 Comments

Alone in the Woods

Posted on April 13, 2015 by Jennie Spotila

I’m happy to share this guest post from Joe Landson. Man, can I relate to this! Each of us patients has that one dear relative, friend, or acquaintance – the one who tells us, repeatedly, that we can do anything … Continue reading →

Posted in Occupying | Tagged , , , , , | 27 Comments

Grief: Words Fail

Posted on April 8, 2015 by Jennie Spotila

There are a lot of things to say about grief, and I had a much longer post planned for today. But words fail me on this. And as a person whose only outlet is words (as opposed to work, socializing, … Continue reading →

Posted in Occupying | Tagged , , , , | 21 Comments

This Week in Virology Covers ME/CFS

Posted on March 29, 2015 by Jennie Spotila

You may remember This Week in Virology (TWiV) from their XMRV coverage several years ago. I’ve remained an avid listener of the show, simply because it is such a great ongoing conversation about science. And TWiV has continued its coverage … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , , , | 23 Comments

Case Definition Bingo

Posted on March 23, 2015 by Jennie Spotila

Our disease is plagued by too many case definitions, with the Institute of Medicine’s Systemic Exertion Intolerance Disease (SEID) being the most recent. Our federal agencies are thus far continuing the agnostic position of accepting whatever case definitions are proposed … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , | 40 Comments

NPR Interview

Posted on February 11, 2015 by Jennie Spotila

Miriam Tucker has been covering ME/CFS for some time now, and published a great piece for NPR about the IOM report today. I was interviewed for the piece, and I can say that Miriam understands this disease, much like David … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , | 19 Comments

IOM: Report Card

Posted on February 10, 2015 by Jennie Spotila

It’s here. A new case definition and a new name. It will take some time for me to get through the 300 page report and prepare a more detailed analysis. But based on the press conference and summary, how did … Continue reading →

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CFSAC Meets P2P

Posted on January 15, 2015 by Jennie Spotila

Mary Dimmock has been kind enough to provide this post and transcript of the CFS Advisory Committee’s discussion of the P2P report this week. Since the Executive Summary for the P2P ME/CFS Workshop was published on December 18, 2014, a … Continue reading →

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

P2P Library Now Available

Posted on January 10, 2015 by Jennie Spotila

As I promised in my previous post, I have created a library of public comments submitted to NIH on the P2P Panel’s draft report. You can view links to each comment on this page. I will update the page with … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 2 Comments