Author Archives: Jennie Spotila

23 and ME

May the depths you have reached hold you still – John O’Donohue Twenty-three years ago today, I woke up with a sore throat. I went to work, and within a few hours I had a high fever and could barely … Continue reading

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Bottom of the Ramp

In aggregate, 2017 turned out to be the biggest year of ME/CFS funding at NIH ever. But when I scratched the surface, I found bad news buried within the superficially good news. We are still at the bottom of the … Continue reading

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FINALLY: RFA Funding Announced

This post was last updated on September 30, 2017. Edits are clearly indicated in the text. At long last, NIH has announced the awards of RFA funding to three Collaborative Research Centers and a Data Management and Coordinating Center for … Continue reading

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CDC Website Update

In this guest post, Mary Dimmock summarizes the latest updates to CDC’s ME/CFS website. In early July, the Centers for Disease Control and Prevention (CDC) replaced its website for myalgic encephalomyelitis (ME), previously called chronic fatigue syndrome (CFS) and now … Continue reading

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Unrest: Movie Review

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

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My “Summer Vacation”

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

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Funding Unrest

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

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Those CDC Documents

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

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Grant Review

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

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Pediatric Primer Not For Prime Time

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

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