Search Results for: guidelines

Ed Yong Made Me Cry

Posted on September 17, 2023 by Jennie Spotila

There I was, reading Ed Yong’s latest newsletter, and wondering if I had the energy to go downstairs for a cup of coffee. Near the end, Yong listed his upcoming appearances along with an invitation: Come say hi; please wear … Continue reading →

Posted in Commentary | Tagged , , , , , , , , | 8 Comments

New York Magazine Article Biased and Riddled with Errors

Posted on November 22, 2022 by Jennie Spotila

Today I sent the following email to the Editor of New York Magazine: As a reader of New York Magazine, I have come to expect your articles to be accurate, well-researched, and fair. Unfortunately your recent piece, “Has Long COVID … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , | 33 Comments

Not NICE

Posted on August 23, 2021 by Jennie Spotila

Last week, the ME community was expecting the National Institute for Health and Care Excellence (NICE) in the UK to publish new guidelines for the treatment of people with ME/CFS. Based on the draft guidelines published in November 2020, it … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , | 2 Comments

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

How Pandemic Response Measures Harm People With Disabilities

Posted on September 7, 2020 by Jennie Spotila

The coronavirus pandemic is reshaping all our lives. With more than six million confirmed infections in the United States, we are living through a seismic cultural event impacting how we work, learn, socialize, and function. For people with disabilities, like … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , , , , , | 10 Comments

Who Reviews ME/CFS Applications for NIH?

Posted on February 5, 2019 by Jennie Spotila

Note: After publishing this post, I discovered that I had inadvertently missed one meeting in 2017. This post was updated on February 12, 2019 to reflect all new calculations. The changes are not significant enough to alter any conclusions. There … Continue reading →

Posted in Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , | 30 Comments

Return on Investment: David Tuller

Posted on April 7, 2018 by Jennie Spotila

When journalist David Tuller asked for crowdfunding in 2017 to support his research and writing on ME for a year, he had already demonstrated his commitment to a rigorous examination of the many problems and issues associated with the PACE … Continue reading →

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

CDC Website Update

Posted on September 21, 2017 by Jennie Spotila

In this guest post, Mary Dimmock summarizes the latest updates to CDC’s ME/CFS website. In early July, the Centers for Disease Control and Prevention (CDC) replaced its website for myalgic encephalomyelitis (ME), previously called chronic fatigue syndrome (CFS) and now … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , , , , , | 34 Comments

Scandal

Posted on July 10, 2016 by Jennie Spotila

Give me 90 minutes. Whoever you are, whatever your connection to or interest in ME/CFS, take 90 minutes to listen to this discussion with academic/journalist David Tuller, DrPH (Lecturer at the School of Public Health and Graduate School of Journalism … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , | 19 Comments

CFS Advisory Committee Meeting Outcomes

Posted on May 21, 2016 by Jennie Spotila

The CFS Advisory Committee is charged with advising the Secretary of Health and Human Services on issues related to ME/CFS. HHS has a very patchy record in its responses to CFSAC recommendations, but the committee’s public meetings remain highly significant. … Continue reading →

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