Tag Archives: living with

A New Virus and ME

Posted on February 28, 2020 by Jennie Spotila

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 →

Posted in Occupying | Tagged , , , , , , , , , , | 36 Comments

I’ve Missed You

Posted on August 17, 2019 by Jennie Spotila

I’ve missed you, my lovelies! I dropped off the grid for awhile in hopes of making progress on my book. I wrote some words. I also saw some beautiful things, and visited beloved friends and family. My husband and I … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , , , , , , | 41 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

The Best Holiday Ever

Posted on November 23, 2018 by Jennie Spotila

Getting a puppy was not in the plan. My husband and I already had a dog (Fargo) and a cat (Lucas). The plan was for my parents to pick out a dog, and I just went along to help since … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , , , , , , | 20 Comments

Educating Doctors

Posted on November 11, 2018 by Jennie Spotila

The Philadelphia Inquirer recently published an article I wrote about educating doctors about ME. The article can be read here. This week, the Philadelphia County Medical Society is hosting a screening of the film Unrest, followed by a panel discussion … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , , , , | 5 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 →

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Rest In Power, CFSAC

Posted on September 7, 2018 by Jennie Spotila

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) is dead. Both the website and the email listserv made the announcement on September 6th: “The charter for the Chronic Fatigue Syndrome Advisory Committee expired on September 5, 2018.” A sudden death under … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , , , , | 24 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