Tag Archives: suffering

How You Doin’?

Posted on June 1, 2020 by Jennie Spotila

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 →

Posted in Occupying | Tagged , , , , , , , , , , , , | 5 Comments

A New Year (With Cake)

Posted on January 2, 2020 by Jennie Spotila

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 →

Posted in Occupying | Tagged , , , , , , | 17 Comments

NIH Funding for ME in 2019: The Details

Posted on November 7, 2019 by Jennie Spotila

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 →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , | 12 Comments

I’ll Make It Simple

Posted on June 5, 2019 by Jennie Spotila

Dr. Jose Montoya has been fired from Stanford University after an investigation into alleged violations of Stanford’s rules of conduct, including sexual harassment, misconduct and assault. The Stanford Daily published an anonymous statement from a group of people affected by … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , | 63 Comments

#MillionsMissing 2019

Posted on May 11, 2019 by Jennie Spotila

We are the disappeared The vanished The millions missing Blink Snap your fingers Gone Do you miss us? Does anyone ask what happened to us? Does it cross your mind that we are still very much alive? We think of … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , | 16 Comments

Protesting Per Fink

Posted on October 12, 2018 by Jennie Spotila

#MEAction New York is holding a protest at Columbia University on Saturday, October 20, 2018 against the misinformation about ME that Dr. Per Fink is spreading to New York medical providers at the 4th Columbia Psychosomatics Conference. Who is Per … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , | 27 Comments

“It is no bad thing to celebrate a simple life.”

Posted on October 7, 2018 by Jennie Spotila

It’s been twenty-four years. Twenty-four years since the morning I woke up with a sore throat, went to work, and got so sick I could barely walk home. Twenty-four years since I became incurable. And this year, I hardly noticed. … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , , , , , | 44 Comments

How To Be Sick . . . Again!

Posted on October 2, 2018 by Jennie Spotila

Toni Bernhard has just published a second edition of her classic How To Be Sick, or as I like to call it: The Book That Will Make You A Better Human. I have relied on How To Be Sick since … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , , , , , , , , , | 6 Comments

Taking Care of Your Self

Posted on September 18, 2018 by Jennie Spotila

Self-care is one of those internet buzzwords that people casually throw around, as if a coloring book or a kitty will solve all your problems. I’m not knocking coloring books and kitties, but generally I think that kind of advice … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , | 22 Comments

After The Afflicted Freak Show

Posted on August 21, 2018 by Jennie Spotila

Many people in the chronic disease community were anticipating Afflicted, the Netflix series about seven people with poorly understood illnesses. In light of Jamison Hill‘s appearance in the show, the ME community hoped to build on the success of Unrest … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , , , , , , , , | 18 Comments