Category Archives: Advocacy

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 →

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The NIH Pilot Program: What We Can Do

Posted on May 28, 2018 by Jennie Spotila

As I discussed in Part One of the NIH Pilot Program, NIH thinks that the three (and only three) Collaborative Research Centers are seeds to generate interest in ME research, and will wait for more research applications to come in … Continue reading →

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The NIH Pilot Program: Wait and See

Posted on May 21, 2018 by Jennie Spotila

MEAction has collected thousands of signatures on a letter to Dr. Francis Collins, asking for a meeting with him and a plan of action to attack the ME public health crisis. That request is all the more urgent because NIH … Continue reading →

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One Dance: Millions Missing 2018

Posted on May 12, 2018 by Jennie Spotila

I was never a talented dancer, but I loved it. I quit ballet lessons when I was in the 3rd grade because it was hard. I struggled to learn the simple choreography in school musical productions. I never learned to … Continue reading →

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All The Time and None At All

Posted on April 25, 2018 by Jennie Spotila

Dr. Francis Collins, in answering a question about ME research on April 20th, said that NIH recognizes and empathizes with our suffering and our “frustration that so little is known.” Then he dropped some knowledge. Dr. Collins said, “Research, done … Continue reading →

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Return on Investment: David Tuller

Posted on April 7, 2018 by Jennie Spotila

When journalist David Tuller asked for crowdfunding in 2017 to support his research and writing on ME for a year, he had already demonstrated his commitment to a rigorous examination of the many problems and issues associated with the PACE … Continue reading →

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2017 NIH Spending on ME/CFS Research

Posted on March 20, 2018 by Jennie Spotila

It is time to analyze how NIH spent its investment in ME research in 2017. NIH has not yet issued its own tally for 2017 through the categorical spending page, so I can’t say for sure how much money NIH … Continue reading →

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Doing Patient Engagement

Posted on February 22, 2018 by Jennie Spotila

One of my passions is engaging people with ME in research, and especially as more than just subjects of the research. That’s why I co-authored a report on best practices in patient engagement. As the NIH-funded Collaborative Research Centers kick … Continue reading →

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Expectations

Posted on January 6, 2018 by Jennie Spotila

Unrest, Jen Brea’s documentary about ME, will be shown on PBS stations around the United States on Monday night – January 8th. The film is already available worldwide, and is short-listed for an Oscar nomination (my review of the film … Continue reading →

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For Serious?

Posted on November 25, 2017 by Jennie Spotila

It’s time for another round of “How Stupid Is This?” That’s a game I just invented. There are no rules, and definitely no prizes. Trust me. It’s a great game. It’s even more fun if you read this whole post … Continue reading →

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