Author Archives: Jennie Spotila

Doing Patient Engagement

Posted on February 22, 2018 by Jennie Spotila

One of my passions is engaging people with ME in research, and especially as more than just subjects of the research. That’s why I co-authored a report on best practices in patient engagement. As the NIH-funded Collaborative Research Centers kick … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , | 7 Comments

“Take Care Of Each Other”

Posted on January 26, 2018 by Jennie Spotila

“Take care of each other.” Those were the closing words in Anne Ortegren’s suicide letter. Anne’s death came as a shock to many of us, myself included. Anne was a friend and long-time supporter of my work. She made a … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , | 38 Comments

Expectations

Posted on January 6, 2018 by Jennie Spotila

Unrest, Jen Brea’s documentary about ME, will be shown on PBS stations around the United States on Monday night – January 8th. The film is already available worldwide, and is short-listed for an Oscar nomination (my review of the film … Continue reading →

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

Personal Positives

Posted on December 26, 2017 by Jennie Spotila

Ah, 2017. You pretty much sucked. I managed to come up with a few good things to be grateful for at Thanksgiving, but overall you were a trash fire. Actually, a friend of mine said that my year escalated from … Continue reading →

Posted in Occupying | Tagged , , , , , | 9 Comments

For Serious?

Posted on November 25, 2017 by Jennie Spotila

It’s time for another round of “How Stupid Is This?” That’s a game I just invented. There are no rules, and definitely no prizes. Trust me. It’s a great game. It’s even more fun if you read this whole post … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , | 39 Comments

Better Late Than Not At All

Posted on November 23, 2017 by Jennie Spotila

Last night, I was really struggling to come up with anything to be grateful for. I can’t say that no one in our family died this year. I can’t say my husband is getting closer to returning to work. I … Continue reading →

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

More Thoughts on Suicide

Posted on November 16, 2017 by Jennie Spotila

Last week, Johanna Haban provided some important resources and information for people with ME who are overwhelmed or are contemplating suicide. This topic is complicated and very important to discuss, so Johanna and I spoke further about issues related to … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , , , , , , , | 9 Comments

Crisis and Suicide

Posted on November 5, 2017 by Jennie Spotila

The list of people with ME who have taken their own lives is too long. Fortunately, there is help available for anyone in crisis, and their loved ones. There are many issues to discuss about suicide and end of life, … Continue reading →

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

The Truth Is Not Always Nice

Posted on November 1, 2017 by Jennie Spotila

My parents used to tell me, “If you can’t say something nice, then don’t say anything at all.” But they also raised me to tell the truth, especially when speaking to authority. I have to say some true things today, … Continue reading →

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

Top

Posted on October 23, 2017 by Jennie Spotila

I am very fortunate in all of you, my readers. I was nominated this year for the Best In Show Blog Award from WEGO Health (for the third time!). Carol Head of Solve ME/CFS Initiative and Tom Kindlon were also … Continue reading →

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