Category Archives: Commentary

CDC Website Update

In this guest post, Mary Dimmock summarizes the latest updates to CDC’s ME/CFS website. In early July, the Centers for Disease Control and Prevention (CDC) replaced its website for myalgic encephalomyelitis (ME), previously called chronic fatigue syndrome (CFS) and now … Continue reading

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Unrest: Movie Review

Spoiler alert: This review discusses some specific scenes from Unrest. Edited to add: No, really! There are SPOILERS here! If you want to see and experience the film with a blank slate, then go see the film and come back … Continue reading

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Pediatric Primer Not For Prime Time

Guest post by Denise Lopez-Majano Young people with ME face huge difficulty in finding knowledgeable healthcare providers because there is only one full-time pediatric ME specialist in the United States, and he is unable to take on any more patients. … Continue reading

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NIH Attitudes Affect Policy: A Story In Two Parts

The current situation for ME research at NIH is still a problem, despite the fact that the RFAs will increase spending on ME by a significant percentage. I say this based on two things: what the ME field needs to … Continue reading

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Book Review: Through the Shadowlands

Julie Rehmeyer is a science writer and person with ME who has written extensively about research and controversies like the PACE trial. But today, she publishes Through the Shadowlands, a book about her personal journey through ME and back to … Continue reading

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Book Review: Growing Gills

I usually focus my book reviews on titles that are directly related to ME, but I’m making an exception today because I want to tell you about Growing Gills by Jessica Abel. This book is about creativity, not disease, but … Continue reading

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Preconditions, Burdens and Ableism

Who are we, as people with ME? Are we “patients”? Are we defined by the disease and its impact on our lives? Which comes first: me or ME? This is a question of identity, and how language can bestow or … Continue reading

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The Cut

Trump’s proposed budget is out. Among all the cuts – because you have to cut in order to increase defense spending while simultaneously giving the rich a tax cut – among all these cuts is one that people with ME … Continue reading

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A “Standard” Patient

Today, Joe Landson shares his experience as a standard, real patient. I work occasionally as a standardized patient, though there is not much standard about me. Standardized patients are actors; we play out a script of symptoms for health care … Continue reading

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CFSAC Public Comment, January 2017

I prepared comments for the January 13, 2017 CFS Advisory Committee meeting, but when my time arrived I decided to wing it. Below is my best reconstruction of what I said, a mixture of my prepared and spontaneous remarks. Start … Continue reading

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