Author Archives: Jennie Spotila

Not NICE

Posted on August 23, 2021 by Jennie Spotila

Last week, the ME community was expecting the National Institute for Health and Care Excellence (NICE) in the UK to publish new guidelines for the treatment of people with ME/CFS. Based on the draft guidelines published in November 2020, it … 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 →

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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Vaxxed Part Two

Posted on March 31, 2021 by Jennie Spotila

On Friday, I got my second dose of the Pfizer COVID-19 vaccine. The vaccine side effects were definitely more intense this time, but not unmanageable. I am so glad I was able to be vaccinated, and I am documenting the … Continue reading →

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Vaxxed Part One

Posted on March 4, 2021 by Jennie Spotila

I got my first COVID-19 vaccine dose!! Since so many people with ME have legitimate concerns about the vaccines, I thought it would be helpful to share my own experience. Two weeks ago, I described the melee competition for vaccines … Continue reading →

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Vaccine Melee

Posted on February 17, 2021 by Jennie Spotila

The COVID-19 vaccine rollout has been uneven, to put it kindly. In my home state of Pennsylvania, it’s been a mess (that’s also putting it kindly). The actual situation has a lot more in common with a Black Friday scramble … Continue reading →

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Vax Me

Posted on February 2, 2021 by Jennie Spotila

There is nothing I want more than to be vaccinated against COVID-19. I know many people in the chronic illness community, particularly people with ME and/or mast cell activation syndrome, are apprehensive about the COVID-19 vaccines. I feel the opposite: … Continue reading →

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Darkness and Light

Posted on December 21, 2020 by Jennie Spotila

Today is the winter solstice, the longest night of the year. It’s a time of darkness in a hard winter, but also a time of light as the sun begins to return. Perhaps it is fitting that I face the … Continue reading →

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