×

Opinion

boy in bed with arms folded and head lowered

Suomalaisen Äidin Kertomus

/ by / 1 Comment
Suomalaiset ME/CFS-potilaat tarvitsevat apuasi. Allekirjoitathan vetoomuksen! Editorilta: Klikkaa tätä lukeaksesi englanninkielinen versio artikkelista. Editor’s note:  Click here to read the English translation of this article. Kaksitoista vuotta sitten syntyi poika, nuorimmaiseni. Iloinen hymyhuuli nauratti aina muita vitseillään ja oli kaikessa innolla mukana. Koulu oli kivaa, samoin urheilu ja kavereiden kanssa leikkiminen. Elämä oli hauska seikkailu. Äkkiä kaikki ...
boy in bed with arms folded and head lowered

The Story of a Finnish Mother

/ by / 4 Comments
People with ME/CFS in Finland need your help. Please sign their petition! Editor's note:  Click here to read the Finnish translation of this article. Twelve years ago a boy was born, my youngest. A happy, delightful child, always making others laugh and enthusiastically participating in everything. He liked the school as well as ...

Join the fight against stigma and pseudoscience in New York

/ by / 2 Comments
This weekend, the New York State Psychiatric Institute is hosting a conference on psychosomatic illness at Columbia University Medical Center -- and they invited Per Fink to speak.  If you have watched Unrest, you know that Fink’s clinic was responsible for the involuntary institutionalization of Karina Hansen, a Danish young ...

The Truth Behind Netflix’s “Afflicted”

/ by / 2 Comments
This article was first published on Medium. We are some of the subjects of the recent Netflix docuseries, Afflicted. We were all told that we would be participating in a project that would show our lives and our struggles with illness through a “compassionate lens.” We participated because our diagnoses are misunderstood and ...

Next steps: a letter to our community

/ by / 13 Comments
Hi everyone, I just wanted to take a moment to comment on some of the confusion and concern of these last few weeks and offer some steps forward to help clarify how #MEAction works, what our core value are, and how we plan to make concrete our policy positions going forward. We ...

NIH Director: Our Judge and Jury, Prison Guard and Executioner

/ by / 0 Comment
An anonymous testimony given before the Chronic Fatigue Syndrome Advisory Committee (CFSAC), which met last week for its bi-annual meeting to discuss recommendations to make to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and chronic fatigue syndrome.  *Note, an anonymous person gave this testimony. #MEAction has published ...

NIH reply to my open letter (and a legal question from a peasant)

/ by / 4 Comments
Samuel Wales, who has had ME for many years, has kindly allowed us to republish his latest blog post, which can be found here. Intro My previous post contains my open letter to Francis Collins. It got a lot of readers. Many were from NIH. But who exactly at NIH is ...

Finding Ourselves in Others: A Tale of Watching Unrest

/ by / 11 Comments
This past spring I attended a screening for Unrest at the Ted Rogers Cinema in Toronto. Something powerfully transformative happened during the screening. Something that can’t be articulated in a review ...

NICE: Listen to the People

/ by / 0 Comment
As the U.K. prepares to review its national clinical guidelines for ME, it is high-time that the National Institute for Health and Care Excellence (NICE) listens to the evidence showing that Graded Exercise Therapy (GET) is harming people with Myalgic Encephalomyelitis. Listen to the words of the words of the director ...

7 Reasons for Why It’s #TimeForUnrest

/ by / 7 Comments
The #TimeForUnrest campaign has officially kicked off, and these are some of my reasons for for why it’s #TimeForUnrest. 1. People are dying ...