Tag Archives: speaking out

Enough

Posted on December 22, 2023 by Jennie Spotila

I’ve been waiting until I felt well enough to post about my breast cancer surgery and recovery, about the treatment I will begin in January. I have words to say about experiencing the healthcare system as a person with cancer … Continue reading →

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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

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 →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , | 7 Comments

#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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David Tuller: Crowdfunding for Us All

Posted on April 22, 2021 by Jennie Spotila

I have supported David Tuller’s investigative journalism since he first began his crowdfunding campaigns,* but it has never been more important than right now. I urge you to join me in supporting his current fundraiser not only for yourself, but … Continue reading →

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The Death Threat Myth Exposed

Posted on April 6, 2021 by Jennie Spotila

Update April 7, 2021: Further comment from Dr. Vicky Whittemore added to the end of this post. Last week, an old story was recounted to a new audience. During the March 30, 2021 NIH telebriefing with the ME/CFS community, Dr. … 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 →

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

David Tuller: Making Progress Together

Posted on October 20, 2020 by Jennie Spotila

For the past four years, I have supported David Tuller’s investigative journalism through his crowdfunding campaigns. I urge you to join me in supporting his current fundraiser so that he can continue his work. Five years ago this month, David … Continue reading →

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