Tag Archives: activism

A Million More, and Counting

Posted on May 12, 2022 by Jennie Spotila

Today is #MillionsMissing, a worldwide day of protest and awareness for the millions of people missing from their lives due to ME. We raise our voices on behalf of our own community, and also on behalf of our compatriots with … Continue reading →

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

Ten Years of Unreal Time

Posted on February 12, 2022 by Jennie Spotila

Ten years ago today, I tapped the internet microphone and published the very first post on this blog, then known as Occupy CFS. My intention was to step into the light, to bring attention to the disease by writing openly … Continue reading →

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

Pandemic Low

Posted on January 18, 2022 by Jennie Spotila

I hit a new pandemic low last week. CDC Director Walensky’s comments about the “encouraging” news that most vaccinated people dying of COVID had multiple comorbidities was the catalyst (see my op ed in the Philadelphia Inquirer), but my despair … Continue reading →

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The 2020 NIH Funding Fact Check

Posted on August 9, 2021 by Jennie Spotila

It is time, once again, for my annual NIH funding fact check. And, once again, NIH’s numbers do not add up. NIH claims to have spent $15 million on ME/CFS research in 2020. In reality, NIH spent slightly under $13 … Continue reading →

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#MillionsMissing Book Review: A Still Life

Posted on May 12, 2021 by Jennie Spotila

Today is #MillionsMissing, a day to raise awareness and make people with ME visible to the world. As part of the event, people with ME are sharing their stories on social media but instead of sharing mine I’m going to … Continue reading →

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NIH Funding for ME in 2020: Falling Flat

Posted on November 6, 2020 by Jennie Spotila

NIH funding for ME/CFS research should be increasing each year. Everyone agrees that this is needed. Instead, 2020 funding has flatlined. Worse yet, we are in danger of falling off several cliffs looming ahead. Image credit: Off the Charts, AJN … Continue reading →

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The 2019 NIH Funding Fact Check

Posted on October 28, 2020 by Jennie Spotila

NIH claims to have spent $15 million on ME/CFS research in 2019. However, my examination of the details shows that NIH actually spent $13 million, which means NIH is exaggerating its spending by 14%. This gap between reality and NIH’s … Continue reading →

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How Pandemic Response Measures Harm People With Disabilities

Posted on September 7, 2020 by Jennie Spotila

The coronavirus pandemic is reshaping all our lives. With more than six million confirmed infections in the United States, we are living through a seismic cultural event impacting how we work, learn, socialize, and function. For people with disabilities, like … Continue reading →

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NIH Funding for ME Needs Life Support

Posted on November 7, 2019 by Jennie Spotila

Fiscal year 2019 is over, and we can now examine how much NIH spent on ME research. In previous years, I’ve broken down the funding at a granular level. I have done that in a separate post for those who … Continue reading →

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Another NIH Funding Fact Check

Posted on May 29, 2019 by Jennie Spotila

In April 2019, NIH finally published their funding numbers for ME/CFS research in 2018. That means it is time for another fact-check and correction! Update October 16, 2019: as explained below, I received more accurate numbers from NIH and have … Continue reading →

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