Tag Archives: frustration

I Want To Scream

Posted on October 14, 2020 by Jennie Spotila

I feel like screaming a lot these days. I’ve been following distancing/isolation guidelines for 217 days and counting, and it’s hard. Reading the news usually leads to doomscrolling on social media. Honestly, there are so many distressing and maddening things … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , , | 37 Comments

Drinking From A Fire Hose

Posted on March 19, 2019 by Jennie Spotila

News is coming at the ME community at a crazy pace right now. Each time I go online, there is another controversial article that requires a response. First there was the NPR chronic pain piece and ensuing debacle. Then came … Continue reading →

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

NIH Obstacles Thwart ME Research

Posted on January 10, 2019 by Jennie Spotila

After I published my post on the NIH Obstacle Course (November 2018), readers’ reactions made clear that a shorter version of the article could be useful. Today, STAT published that shorter article in the First Opinion section. You can read … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , , , , , , , , , | 5 Comments

NIH’s Obstacle Course to Success for ME/CFS Researchers

Posted on November 29, 2018 by Jennie Spotila

A shorter version of this article was published on STATNews on January 10, 2019. One message dominates NIH’s talk about ME/CFS research: submit more high quality grant applications. Funding would increase if there were more high quality grant applications. Give … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , | 9 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

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

Guest Post: Frustration

Posted on February 17, 2014 by Jennie Spotila

I continue to struggle with the crash from hell, but Denise Lopez-Majano has graciously provided a guest post. Her thoughts on ME-frustration are right on target for me this week! As a caregiver for her two adult sons, Denise is … Continue reading →

Posted in Occupying | Tagged , , , , , , , , | 29 Comments