Long COVID’s U.S. Economic Impact Est. $140-$600 Billion Annually
October 7, 2022
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Post-viral conditions like ME/CFS provide guidance for estimating the economic impact of Long COVID.
Category: Opinion
Coming to Terms with My Disability
July 23, 2020
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My husband often pushes me home in my son’s stroller because I have enough energy to get to the playground but not enough to get home. There are so many types of disabilities and so many ways to address them, and the disability rights’ activists of the 70s taught the world – and myself –
Degrees of Distance
October 15, 2019
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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
March 20, 2019
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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 am eagerly awaiting the rest of this project, hoping to live a less restricted life.
Suomalaisen Äidin Kertomus
November 18, 2018
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Suomalaiset ME/CFS-potilaat tarvitsevat apuasi. Allekirjoitathan vetoomuksen! [maxbutton id=”21″ url=”https://my.meaction.net/petitions/me-cfs-is-not-a-functional-disorder-we-call-for-appropriate-treatment” text=”Allekirjoita vetoomus!” ] 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.
The Story of a Finnish Mother
November 16, 2018
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People with ME/CFS in Finland need your help. Please sign their petition! [maxbutton id=”21″ url=”https://my.meaction.net/petitions/me-cfs-is-not-a-functional-disorder-we-call-for-appropriate-treatment” text=”Sign the 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
Join the fight against stigma and pseudoscience in New York
October 19, 2018
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 woman with ME. [pullquote
Next steps: a letter to our community
June 28, 2018
16 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 are not a
NIH Director: Our Judge and Jury, Prison Guard and Executioner
June 26, 2018
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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 it but did not
NIH reply to my open letter (and a legal question from a peasant)
April 24, 2018
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 listening? I was hoping