Category: Featured opinion

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 woman with ME.   [pullquote

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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 misunderstood and stigmatized. We thought

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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 forward. We are not a

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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 published it but did not

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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 of the National Institute of

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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).

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Finding Connection within M.E.

During the initial years of having Myalgic Encephalomyelitis (ME), it is common to watch all your interpersonal ties slowly dissolve. Being in my early 20s, those around me craved excitement, adventure, and new experiences. Those things I desired too, but little of which I could do or offer in my current state of health.

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