Author Archives: Jennie Spotila

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

The Finger

Posted on February 3, 2014 by Jennie Spotila

Last week, my body gave me the finger. I can’t even say I didn’t deserve it. After more than 19 years, I still don’t always listen to my body and this makes her very, very angry with me. I’ve previously … Continue reading →

Posted in Occupying | Tagged , , , , , | 44 Comments

Accurate and Precise

Posted on January 27, 2014 by Jennie Spotila

This is the text version of my presentation to the Institute of Medicine Panel today. I delivered my comments remotely, because a fever has kept me bedridden for three days. I tried to speak as naturally and extemporaneously as possible, … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 55 Comments

At the Microphone

Posted on January 20, 2014 by Jennie Spotila

Next Monday, the IOM Panel creating new diagnostic criteria for ME/CFS will hold a public meeting. This may or may not be the only public meeting for the study, and it will be webcast. As you can see, I am … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 85 Comments

More on P2P

Posted on January 13, 2014 by Jennie Spotila

Robert Miller posted a statement on Facebook last night revealing that he was one of the members of the P2P Working Group that met at NIH last week. I’ve posted his full comment below, with his permission. Bob is very … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , | 21 Comments