Tag Archives: speaking out

WEGO Best in Show Nomination

Posted on November 20, 2013 by Jennie Spotila

I am honored to have been nominated for a WEGO Health Activist award in the Best in Show: Blog category! You can see my profile page, and endorse the nomination if you are so inclined, here. To create my profile … Continue reading →

Posted in Occupying | Tagged , , , | 17 Comments

FAQchecking

Posted on November 18, 2013 by Jennie Spotila

So We Had Some Questions . . . For the last few weeks, there’s been a rumor that HHS might actually respond to questions about the Institute of Medicine study. PANDORA urged HHS to address specific questions about the contract … Continue reading →

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

CFSAC Info

Posted on November 14, 2013 by Jennie Spotila

The CFS Advisory Committee meeting is less than a month away: December 10th and 11th. To help you prepare, I’ve collected basic information about the meeting. I’ll be posting more about what to watch for in the meeting soon. The … Continue reading →

Posted in Advocacy | Tagged , , , , | 4 Comments

IOM Process Check

Posted on November 4, 2013 by Jennie Spotila

Controversies continue to swirl around the Institute of Medicine’s study to create a clinical case definition for ME/CFS. I have new information to share, as well as important information about the process IOM uses for its studies. In preparing this … Continue reading →

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

Go Big or Go Home

Posted on October 31, 2013 by Jennie Spotila

This is Jen Brea after a 12 hour photo shoot for her film, Canary In A Coal Mine. I chose this picture of Jen because I’ve felt that way too. Every ME/CFS patients has felt this way: unable to stand, … Continue reading →

Posted in Commentary | Tagged , , , | 13 Comments

Don’t Lose Sight of CFSAC

Posted on October 22, 2013 by Jennie Spotila

The IOM controversy and the government shut down have been distracting, but CFS Advisory Committee deadlines are fast approaching. The CFSAC meeting is just three weeks away – November 12-13th – which means that public comment will be due soon, … Continue reading →

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

Exhibit A

Posted on October 17, 2013 by Jennie Spotila

I’ve been very critical of HHS and how they have handled communications and engagement with the ME/CFS patient community, and the fiasco surrounding the Institute of Medicine study is a sinkhole of terrible engagement. But if HHS and/or the IOM … Continue reading →

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

Which Paddle?

Posted on October 11, 2013 by Jennie Spotila

The IOM study is moving forward, and fast. I can confirm through multiple sources that the IOM has reached out to multiple ME/CFS organizations for nominations to the clinical case definition committee. Those nominations are due today. I can also … Continue reading →

Posted in Advocacy | Tagged , , , , , | 45 Comments

Convergence

Posted on October 10, 2013 by Jennie Spotila

In the last two weeks, position statements on the IOM and ME/CFS case definitions have been outnumbered only by rumors and allegations. I’ve had trouble keeping up and I am immersed in this issue. I can’t imagine how challenging it … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 45 Comments

Training Wheels

Posted on October 8, 2013 by Jennie Spotila

When the news about the IOM contract first broke on August 27th, I was at my training for FDA Patient Representatives. Here is my much delayed write-up of that training. Every year, the FDA Patient Representative Program holds an in-person … Continue reading →

Posted in Advocacy | Tagged , , , , , , | 18 Comments