Covid-19 Resources for People with ME

×

Category Archives: Featured opinion

Adriane sitting in electric wheelchair in park with child on lap

Coming to terms with my disability

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 ...

Join the fight against stigma and pseudoscience in New York

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”

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 ...

Next steps: a letter to our community

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 ...

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

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 ...

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

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 ...

Finding Ourselves in Others: A Tale of Watching Unrest

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

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

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

As Summer Ends, A Warning to NIH

Johanna Kaiser, a person with ME, sent this open letter over Labor Day to the director of the National Institutes of Health (NIH), Dr. Francis Collins, and the director of National Institute of Neurological Disorders (NINDS) ...