Author Archives: Jennie Spotila

Unrest: Movie Review

Posted on September 12, 2017 by Jennie Spotila

Spoiler alert: This review discusses some specific scenes from Unrest. Edited to add: No, really! There are SPOILERS here! If you want to see and experience the film with a blank slate, then go see the film and come back … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , , , , , , , , , , , , , , , | 15 Comments

My “Summer Vacation”

Posted on August 22, 2017 by Jennie Spotila

What I’ve done on my “summer vacation” has not been fun. I’ve had a rough couple of months. Non-ME health issues have gobbled up most of my capacity, and I’m still feeling the repercussions. I’m not ready to talk about … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , , , , | 42 Comments

Funding Unrest

Posted on August 12, 2017 by Jennie Spotila

Four years ago, I wrote that Jen Brea’s film, then titled Canary In A Coal Mine, could be a defining moment in ME advocacy. Today, we stand on the threshold of a watershed moment for our disease, and Jen is … Continue reading →

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

Those CDC Documents

Posted on August 4, 2017 by Jennie Spotila

Last month, I wrote about CDC wanting to charge me over $200 for documents I had requested under the Freedom of Information Act. I was looking for information on how much CDC had spent on the Institute of Medicine (now … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , , | 8 Comments

Grant Review

Posted on July 26, 2017 by Jennie Spotila

Disclosure: I participated in the preparation of one of the Collaborative Research Center applications. Today and tomorrow, the applications for ME/CFS Collaborative Research Centers and Data Coordinating Center are undergoing peer review at NIH. It’s a very important stage in … Continue reading →

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

Pediatric Primer Not For Prime Time

Posted on July 21, 2017 by Jennie Spotila

Guest post by Denise Lopez-Majano Young people with ME face huge difficulty in finding knowledgeable healthcare providers because there is only one full-time pediatric ME specialist in the United States, and he is unable to take on any more patients. … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , , | 41 Comments

Best In Show Blog

Posted on July 17, 2017 by Jennie Spotila

I am excited to announce that for the third time, Occupy ME has been nominated for the Best In Show Blog award in the WEGO Health Awards! Now we enter the part of the process where you can influence the … Continue reading →

Posted in Occupying | Tagged , , , , , , | 15 Comments

NIH Attitudes Affect Policy: A Story In Two Parts

Posted on June 27, 2017 by Jennie Spotila

The current situation for ME research at NIH is still a problem, despite the fact that the RFAs will increase spending on ME by a significant percentage. I say this based on two things: what the ME field needs to … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , | 45 Comments

CDC Hilarity

Posted on June 22, 2017 by Jennie Spotila

Over the years, I have filed many FOIA requests, and I have learned that it can take a long time to get a response. But CDC takes the cake. In my experience, all the agencies meet the statutory requirement of … Continue reading →

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

CFSAC: Second Verse, Same as the First

Posted on June 19, 2017 by Jennie Spotila

Another CFS Advisory Committee meeting is upon us. The webinar meeting will be held on June 29th and 30th. And as has been the case in the past, the federal approach to the Committee appears lackadaisical. This bare minimum effort … Continue reading →

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