Tag Archives: occupy

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

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

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

Pedal to the Metal

Posted on September 20, 2013 by Jennie Spotila

I feel like an engine that has been gunning too long. I’m revving revving revving and I can smell something burning and a gear is about to blow. The rest of my life is being neglected. I haven’t been able … Continue reading →

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

Insult, Meet Injury

Posted on September 17, 2013 by Jennie Spotila

Did you think that your efforts to tell HHS to freeze the IOM contract to create a clinical definition for ME/CFS were successful? Did you have the impression that your government would listen to your concerns? Join me in mourning … Continue reading →

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

How To Be Sick (Giveaway!)

Posted on July 15, 2013 by Jennie Spotila

I have been a fan of Toni Bernhard’s book How To Be Sick since it first came out in 2010. There is now an audiobook version available, which is fantastic for people who are too sick to read, and we … Continue reading →

Posted in Occupying | Tagged , , , , , , | 56 Comments

Data Queen

Posted on July 10, 2013 by Jennie Spotila

One of the biggest weapons I have in the fight against ME/CFS is data. I keep track of my activities, medications, sleep, and symptoms daily, and over time that data can be very powerful. I’ve blogged extensively about wearing a … Continue reading →

Posted in Occupying | Tagged , , , , | 11 Comments

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

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

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