Tag Archives: post-exertional malaise

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 →

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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

RFA Ticker, 1/16/17

Posted on January 15, 2017 by Jennie Spotila

NIH issued no RFAs last week, but we have plenty to talk about after Dr. Vicky Whittemore’s presentation at the CFS Advisory Committee on Friday. Dr. Whittemore’s announcement was simultaneously welcome and disappointing. During her update to the committee on … Continue reading →

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The Wall of Nope

Posted on December 7, 2016 by Jennie Spotila

I have reached a new low in life with ME. I call it: The Wall of Nope. The Wall of Nope is not a physical crash. It’s an inability to deal with obligations and necessary things. Here’s an example: I’m … Continue reading →

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2016 NIH Spending on ME/CFS Studies

Posted on November 1, 2016 by Jennie Spotila

Update: This post was revised on March 12, 2018 to reflect the addition of intramural research to the total. When I analyzed NIH’s spending on ME/CFS studies in Fiscal Year 2015, I concluded: The bottom line is that NIH is … Continue reading →

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Tasha

Posted on October 14, 2016 by Jennie Spotila

There are many beautiful, powerful images from the September 27th Millions Missing protests. My friend Tasha spoke at the #MillionsMissing New York City event, and I’m proud to share her comments with you here. Hi, my name is Tasha and … Continue reading →

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

Scandal

Posted on July 10, 2016 by Jennie Spotila

Give me 90 minutes. Whoever you are, whatever your connection to or interest in ME/CFS, take 90 minutes to listen to this discussion with academic/journalist David Tuller, DrPH (Lecturer at the School of Public Health and Graduate School of Journalism … Continue reading →

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Brilliant Scientist Among the #MillionsMissing

Posted on May 25, 2016 by Jennie Spotila

My friend Barb opened a window into the extraordinary loss she has endured because of ME/CFS. Please read her powerful statement, and count her among the #MillionsMissing. If you want a tiny peek into what I live with every day, … Continue reading →

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I Am Among the #MillionsMissing

Posted on May 25, 2016 by Jennie Spotila

I miss hiking. Getting into the woods, to the enveloping strength of nature, was my favorite thing to do. I wanted to through-hike the Appalachian Trail. I miss more weddings, graduations, and funerals than I can count. I miss having … Continue reading →

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PACE-Gate

Posted on May 12, 2016 by Jennie Spotila

It is International ME/CFS Awareness Day, and what is most on my mind is the status of PACE-Gate: the controversy over the design, conduct and results of the PACE trial. PACE is the largest clinical trial in ME/CFS, and it … Continue reading →

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