Tag Archives: drugs

Dr. Collins: Transcript of Remarks on April 5, 2019

Posted on April 5, 2019 by Jennie Spotila

Dr. Francis Collins addressed the Accelerating Research in ME/CFS meeting for ten minutes this morning. This is my best effort at a transcript of those comments. Thank you, Walter. I’m really glad to be able to be here for at … Continue reading →

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

How To Represent

Posted on July 16, 2018 by Jennie Spotila

Last month, I had my first chance to serve on an FDA Advisory Committee as a Patient Representative. I had a lot to learn about the drug under consideration, but I also learned how to use my individual perspective to … Continue reading →

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

Talk To FDA About Chronic Pain

Posted on June 1, 2018 by Jennie Spotila

The FDA wants to hear from people with chronic pain, and is hosting a meeting on July 9, 2018 to collect public input. I have chronic pain, and I know that many of you do as well. This meeting is … Continue reading →

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

CFSAC Public Comment, January 2017

Posted on January 18, 2017 by Jennie Spotila

I prepared comments for the January 13, 2017 CFS Advisory Committee meeting, but when my time arrived I decided to wing it. Below is my best reconstruction of what I said, a mixture of my prepared and spontaneous remarks. Start … Continue reading →

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

Still #MillionsMissing

Posted on September 27, 2016 by Jennie Spotila

Today is another, larger #MillionsMissing protest, and I am missing it. I miss a lot of things. One of the best things I ever did in my life was to drive cross country, camping in national parks. It changed my … Continue reading →

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

#MillionsMissing

Posted on May 10, 2016 by Jennie Spotila

For as long as I have been an ME/CFS advocate, I have heard people say we should protest/take to the streets/be more like ACT UP. But for the most part, demonstrations have been small (even one woman) shows. That is … Continue reading →

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

Staying the Course to Where?

Posted on May 3, 2016 by Jennie Spotila

Dr. Francis Collins, Director of the National Institutes of Health, made a request of the ME/CFS community. During the March 8, 2016 NIH telebriefing, Dr. Collins said: So please take our commitment with great seriousness. Please also stay the course … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , | 17 Comments

FDA Progress on Measuring Outcomes

Posted on November 9, 2015 by Jennie Spotila

I have an update on the progress of the ME/CFS Outcomes Measures Working Group working with FDA. As I reported in March 2015, the FDA helped convene a Working Group comprised of representatives from FDA, NIH, CDC, and academia in … Continue reading →

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

P2P: Where Next?

Posted on June 29, 2015 by Jennie Spotila

There is one official final step in the P2P process: a federal partners meeting supposed to be held six to eight months after the workshop. But there are other marching orders, too. For us. Federals Only As described on the … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , , , , , , | 10 Comments

P2P Final Chapter

Posted on June 16, 2015 by Jennie Spotila

The final P2P ME/CFS documents are coming out today. I am severely crashed from family obligations, so in-depth analysis will take me a little longer than normal. But here are quick descriptions of the various articles to get you started: … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , , | 32 Comments