Tag Archives: suffering

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

23 and ME

Posted on October 6, 2017 by Jennie Spotila

May the depths you have reached hold you still – John O’Donohue Twenty-three years ago today, I woke up with a sore throat. I went to work, and within a few hours I had a high fever and could barely … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , , , , , , , , , , , | 43 Comments

Bottom of the Ramp

Posted on October 3, 2017 by Jennie Spotila

In aggregate, 2017 turned out to be the biggest year of ME/CFS funding at NIH ever. But when I scratched the surface, I found bad news buried within the superficially good news. We are still at the bottom of the … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , | 22 Comments

Unrest: Movie Review

Posted on September 12, 2017 by Jennie Spotila

Spoiler alert: This review discusses some specific scenes from Unrest. Edited to add: No, really! There are SPOILERS here! If you want to see and experience the film with a blank slate, then go see the film and come back … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , , , , , , , , , , , , , , , | 15 Comments

My “Summer Vacation”

Posted on August 22, 2017 by Jennie Spotila

What I’ve done on my “summer vacation” has not been fun. I’ve had a rough couple of months. Non-ME health issues have gobbled up most of my capacity, and I’m still feeling the repercussions. I’m not ready to talk about … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , , , , | 42 Comments

Funding Unrest

Posted on August 12, 2017 by Jennie Spotila

Four years ago, I wrote that Jen Brea’s film, then titled Canary In A Coal Mine, could be a defining moment in ME advocacy. Today, we stand on the threshold of a watershed moment for our disease, and Jen is … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , | 11 Comments

Guest Post: Sickaversary

Posted on June 1, 2017 by Jennie Spotila

My friend, Jenny R, wrote these profound words about her sickaversary. 10 years and 4 days ago today I got sick and never got better. I wrote this to commemorate it: I want to write something incredibly profound and moving … Continue reading →

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

Book Review: Through the Shadowlands

Posted on May 23, 2017 by Jennie Spotila

Julie Rehmeyer is a science writer and person with ME who has written extensively about research and controversies like the PACE trial. But today, she publishes Through the Shadowlands, a book about her personal journey through ME and back to … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , | 7 Comments

Missing, Not Marching

Posted on April 22, 2017 by Jennie Spotila

I should be marching right now. I mean, I had my plans all worked out. #MillionsMissing tshirt? Check. Wheelchair wheels freshly pumped up? Check. Water and food? Check. Ride to March? Check. Kick ass awesome sign made by my husband? … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , , , , , , , | 31 Comments