Author Archives: Jennie Spotila

Pandemic Low

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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My Favorite Books of 2021

I have always loved books, and now that I am writing one myself, I love them even more. I read for entertainment and education, and I pick them apart to see what makes them work (or not). There is nothing … Continue reading

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Community Gratitude

Talking about gratitude on Thanksgiving Day (in the U.S.) is cliche, I know. But I have to chime in because this year, I am feeling overwhelming gratitude for my communities. I have been blessed in my family and friends for … Continue reading

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Do We Ever Stop Counting?

I have been sick for twenty-seven years, today. My sickaversary gives rise to different feelings every year. Burdened. Triumphant. Heartsick. Contented. Marking the day, here with you or on my own, feels important. October 6th is the day my life … Continue reading

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The Coding Problem: Why No American Can Develop ME/CFS, Including After COVID

Guest post by Mary Dimmock Please sign this petition to fix the coding problem making Americans with ME/CFS invisible. If a tree falls in the forest, does it make a sound? And if an American develops ME/CFS, would the US … Continue reading

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Not NICE

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

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

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

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

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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