Author Archives: Jennie Spotila

Compassion

I have spent a lot of time reflecting on compassion this year. It’s been impossible not to, as I read the news each day. 2020 has been–well, it’s been 2020. I have felt such anger and frustration at the lack … Continue reading

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NIH Funding for ME in 2020: Falling Flat

The 2020 Numbers Based on currently available numbers, NIH spent $11,696,985 on investigator-initiated grants and the Collaborative Research Centers in FY2020 (see note 1) That is basically flat with 2019 and 2018 spending. Here is how 2020 compared to 2019. … Continue reading

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The 2019 NIH Funding Fact Check

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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David Tuller: Making Progress Together

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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I Want To Scream

I feel like screaming a lot these days. I’ve been following distancing/isolation guidelines for 217 days and counting, and it’s hard. Reading the news usually leads to doomscrolling on social media. Honestly, there are so many distressing and maddening things … Continue reading

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How Pandemic Response Measures Harm People With Disabilities

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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Always Another Chance

Toni Bernhard has published a new book, How To Be Sick: Your Pocket Companion. Whether you have read Toni’s other books or not, I think you will find this one to be the perfect fit. This book is not a … Continue reading

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How To Stay At Home

One thing I have learned during the COVID-19 pandemic is that people with chronic illness have a lot to teach healthy people. We have the skills and hard-earned experience of coping with social isolation and restrictions on what we want … Continue reading

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How You Doin’?

How are you in these quaran-times, my friends? My husband and I are doing everything possible to avoid infection because we know how scary COVID-19 can be. I have not left my house for anything except short walks in more … Continue reading

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Sacrifice

I’ve lost count of the number of masks I’ve sewn. More than sixty, at least. I was sewing even before the CDC recommended that everyone wear masks, because I knew that my husband and I needed them. When the official … Continue reading

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