Author Archives: Jennie Spotila

IOM: The Big Day

Posted on February 6, 2015 by Jennie Spotila

On February 10th, the Institute of Medicine committee will release its report Beyond ME/CFS: Redefining an Illness. The release event will be webcast at 11am Eastern. The report contents are under embargo until the release, although rumors are flying about … Continue reading →

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

Guest Post: Slightly Snarky

Posted on February 2, 2015 by Jennie Spotila

Joe Landson authors this guest post on the chasm between patient experiences and the people who need to understand them. We suffer through many devastating symptoms, but today I’m only thinking of one. It’s perhaps the most devastating effect of … Continue reading →

Posted in Commentary | Tagged , , , , , , , | 5 Comments

Broken

Posted on January 22, 2015 by Jennie Spotila

My mother died last night. She was a very private person, which is why I have not spoken publicly about what my family has been through in the last two years. I was thinking to write about her now, because … Continue reading →

Posted in Occupying | Tagged , | 52 Comments

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 →

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P2P Obstacles

Posted on January 7, 2015 by Jennie Spotila

Are you working on your comments on the P2P Panel’s Draft Report? I hope so! Unfortunately, the Office of Disease Prevention (ODP) has taken several actions that create barriers in the commenting process. I have details, and I suggest several … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , | 15 Comments

This Year

Posted on January 1, 2015 by Jennie Spotila

I’m not one for New Year’s resolutions. You make a plan or you don’t. You execute it or you don’t. Shit happens, and all you can really control is how you respond. But this New Year’s wish from Neil Gaiman … Continue reading →

Posted in Occupying | Tagged , | 5 Comments

Laura Hillenbrand is Not Your Bitch*

Posted on December 22, 2014 by Jennie Spotila

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

P2P Report: First Read

Posted on December 19, 2014 by Jennie Spotila

The P2P Panel’s draft report on advancing ME/CFS research has been published. The report is not the nightmare that many people feared, but it is also not what I had hoped for or what we need. The advocacy chatter I’ve … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , | 38 Comments

P2P: Eating Your Cake

Posted on December 10, 2014 by Jennie Spotila

In a surprising move at the P2P Workshop yesterday, Dr. Beth Smith from the Evidence Practice Center (authors of the systematic evidence review) suggested: “Consider retiring the Oxford case definition.” Why was this remarkable? Because the systematic evidence review had … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , | 48 Comments