Tag Archives: occupy

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

The Oxford Problem

Posted on December 8, 2014 by Jennie Spotila

Today, I’m very pleased to share this guest post by Chris Heppner. I loved Oxford when there as undergraduate (1951-4)–truly a city of dreaming spires, peaceful libraries, walks in the country to a lovely old pub by a waterfall with … Continue reading →

Posted in Commentary, Research | Tagged , , , , , , , , , , , , | 10 Comments

CFSAC: Stand Up for Your Work

Posted on December 3, 2014 by Jennie Spotila

I delivered this public comment by telephone at the December 3, 2014 CFS Advisory Committee meeting. This committee’s legitimacy is at stake. Nine months ago, your March meeting recommendations were substantially altered after your public vote. Documentary evidence that I … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , | 10 Comments

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