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
Category: Featured opinion
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
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
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
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
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.
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
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.