Author Archives: Jennie Spotila

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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Safety In Isolation

The COVID-19 pandemic has expanded dramatically in the last two weeks. I won’t attempt to summarize everything that has happened; there’s too much. Instead, I have gathered some information that I hope will be helpful to people with ME and … Continue reading

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A New Virus and ME

Updated: March 3, 2020 There is a new coronavirus circulating the globe, and there are quarantines of different sizes in multiple countries. This has led to great anxiety in financial markets, the media, and in communities. And you might be … Continue reading

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A New Year (With Cake)

In the last weeks of 2019, social media was full of people talking about their accomplishments of the last decade, or what they were most proud of, or the biggest changes they made. These posts made me feel terrible. What … Continue reading

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NIH Funding for ME Needs Life Support

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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NIH Funding for ME in 2019: The Details

Every year, I take a careful look at the funding that NIH reports it spent on ME research. Normally, this is mostly a number crunching exercise, but this year I wrote an entire post about a serious problem I discovered … Continue reading

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