Author Archives: Jennie Spotila

Not So FOIA

Posted on March 17, 2014 by Jennie Spotila

The problems ME/CFS advocates are having with Freedom of Information Requests are swiftly acquiring epic proportions. Jeannette Burmeister filed a lawsuit this year to compel release of documents for one of her FOIA requests. Patricia Carter has also filed FOIA … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , | 5 Comments

Exit Stage Right

Posted on March 13, 2014 by Jennie Spotila

Another CFS Advisory Committee member has resigned. After the March 11, 2014 CFSAC meeting, I emailed the Office of Women’s Health and asked for a list of who had attended the meeting. I tried to keep track of the roll … Continue reading →

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

Silver Platter of Frustration

Posted on March 12, 2014 by Jennie Spotila

Yesterday’s CFS Advisory Committee meeting was insane. Wait, maybe the meeting just drove me insane. Or was the whole thing just insanely inane? I don’t even know anymore. Wait a second, hang on. Ok, let me start again. Yesterday’s CFS … Continue reading →

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

Guidance to Industry

Posted on March 10, 2014 by Jennie Spotila

Last year, the FDA said it would be preparing Guidance to Industry on drug development for ME/CFS and now they have delivered. Guidance for Industry Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Developing Drug Products For Treatment* has been published in draft form, … Continue reading →

Posted in Advocacy, Research | Tagged , , , , | 13 Comments

Systematic Overreaching

Posted on March 6, 2014 by Jennie Spotila

A study published last month* by a group from Norway reports a systematic review of ME/CFS case definitions. It’s important because the Institute of Medicine panel is likely conducting a similar process as part of its work, but the study … Continue reading →

Posted in Research | Tagged , , , , , , | 7 Comments

Yay, and Also Boo

Posted on March 3, 2014 by Jennie Spotila

Yay! The CFS Advisory Committee will meet on Tuesday, March 11th from 12-5pm. This is the makeup day for the meeting cancelled on December 10, 2013. Boo! This is another webinar, and one can only hope the technical aspects will … Continue reading →

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

Viral

Posted on February 28, 2014 by Jennie Spotila

I had it all under control. After coming down with a virus (mild flu?) in January, I got the message and seriously scaled back my activity. Joe Landson, Denise Lopez-Majano, and Claudia Goodell all came through for me in a … Continue reading →

Posted in Occupying | Tagged , , , , , , | 20 Comments

Guest Post: Wind Up Clock

Posted on February 24, 2014 by Jennie Spotila

The final post in this stretch of guest authors comes from Claudia Goodell. Claudia is among the most proactive ME/CFS patients I know, trying to make a new life for herself with this disease while also participating in advocacy. I … Continue reading →

Posted in Commentary | Tagged , , , , , , , , | 11 Comments

Guest Post: Frustration

Posted on February 17, 2014 by Jennie Spotila

I continue to struggle with the crash from hell, but Denise Lopez-Majano has graciously provided a guest post. Her thoughts on ME-frustration are right on target for me this week! As a caregiver for her two adult sons, Denise is … Continue reading →

Posted in Occupying | Tagged , , , , , , , , | 29 Comments

Guest Post: Homeless

Posted on February 10, 2014 by Jennie Spotila

I continue to struggle with the crash from hell, but Joe Landson has graciously stepped up to provide a guest post. His chance encounter on the streets of Washington, DC gave him a powerful insight into our own advocacy situation. … Continue reading →

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