Category Archives: Commentary

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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Zero, Zilch, Zippo

Zero, zilch, zippo, nada, cero, null, nulla, sifr, nul’, ling, nialas, sero, naught. No matter how you say it, we got nothing. Despite the promise in October 2015 that a request for proposals would be issued “soon.” Despite Dr. Collins’s … Continue reading

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A Myalgic Carol

Or, A Most Merry Tale of Encephalomyelitis, by Joe Landson Dr. Stephen Straus was surely dead. Lo, he had been dead these nine-and-one-half years, but that made no difference to Ebenezer Scrooge, MD, PhD, as he locked up the Office … Continue reading

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The Wall of Nope

I have reached a new low in life with ME. I call it: The Wall of Nope. The Wall of Nope is not a physical crash. It’s an inability to deal with obligations and necessary things. Here’s an example: I’m … Continue reading

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The Government Attitude Needed

Government/advocate interactions frequently happen on a public stage, where everyone is rightly careful about what they say. Sometimes, though, we can get access to behind the scenes communication. In emails that the authors probably believed would remain private, we can … Continue reading

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