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Category Archives: Opinion

Degrees of Distance

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Many of us (housebound/bedbound) worry about dear ones who are sick, infirm, or struggling, esp. if we live afar. We feel not being there when we need to be, want to be, no matter what the circumstances, as failed fidelity, incurring a debt of love ...

A Glorious Moment for the Dutch Government to Step Up to the Plate

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Today, exactly a year ago, a report by the Dutch Health council expressed the urgent message that immediate intervention is required regarding ME. And last December the current Minister of Medical Care, Bruno Bruins, stated that he would be following up on all accounts. As someone dealing with ME, I ...
boy in bed with arms folded and head lowered

Suomalaisen Äidin Kertomus

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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

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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

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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”

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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

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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

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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)

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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

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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 ...