Author Archives: Jennie Spotila

Precision Is Required

Posted on June 25, 2013 by Jennie Spotila

Post updated June 28, 2013. See end of post for additional information from FDA. Five ME/CFS advocates recently sent a letter to DHHS, FDA and select members of Congress requesting that FDA convene a second meeting with ME/CFS patients “to … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , | 20 Comments

Meeting METS

Posted on June 21, 2013 by Jennie Spotila

It has been more than a year since I had a two-day exercise test. My exercise test report was full of all kinds of jargon, and over the last year I have been trying to decode and apply it to … Continue reading →

Posted in Occupying | Tagged , , , , , , , | 6 Comments

Requesting an Investigation

Posted on June 18, 2013 by Jennie Spotila

You may recall that at the May 23, 2013 CFS Advisory Committee, voting members Eileen Holderman and Dr. Mary Ann Fletcher stated on the record that they had been intimidated for expressing their views. With assistance from two fellow advocates, … Continue reading →

Posted in Advocacy | Tagged , , , , , , | 9 Comments

Sometimes It’s One of Those Times

Posted on June 11, 2013 by Jennie Spotila

Sometimes, life just vomits in your lap. One thing after another goes wrong, and you feel like you’re juggling roaring chainsaws while pedaling a unicycle. Or maybe that’s just me. 2013 has been challenging, to say the least. I’m fully … Continue reading →

Posted in Occupying | Tagged , , , , , | 13 Comments

No Facts for YOU!

Posted on June 6, 2013 by Jennie Spotila

The NIH funding argument is a broken record: Advocates and researchers say, “We want more funding!” NIH replies, “We need more applications!” And advocates and researchers reply, “Your review panel is made up of dentists!” Back and forth. Back and … Continue reading →

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

Perplexed

Posted on June 3, 2013 by Jennie Spotila

The good news, I guess, is that we survived another CFS Advisory Committee meeting. The bad news is that much of what happened made no sense to me. Some excellent summaries of the meeting are available, including this very detailed … Continue reading →

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

Drug and FDA News, May 2013

Posted on May 30, 2013 by Jennie Spotila

Yesterday, the CFIDS Association formally announced what had been rumored to be on the way: they are preparing to file an Investigational New Drug application. The first step will be a pre-IND meeting with FDA. This kind of meeting is … Continue reading →

Posted in Research | Tagged , , , , , , , | 4 Comments

Fireworks

Posted on May 26, 2013 by Jennie Spotila

I will be posting a summary of what we learned (or didn’t learn) at last week’s CFS Advisory Committee meeting, but one incident requires detailed examination. Towards the end of the second day, conflict erupted between several committee members, allegations … Continue reading →

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

CFSAC Testimony from Amy Squires

Posted on May 22, 2013 by Jennie Spotila

Amy Squires is my dear friend, and serves as Chairman of the Board of Directors of the CFIDS Association. She has given me permission to post the comments she made to the CFS Advisory Committee today. My name is Amy … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 2 Comments

CFSAC Testimony May 2013

Posted on May 22, 2013 by Jennie Spotila

I submitted two versions of testimony to the May 22-23, 2013 CFS Advisory Committee meeting. My written testimony can be viewed here.  What follows is the testimony I delivered by telephone this morning: My name is Jennifer Spotila, and I … Continue reading →

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