The Future Is An Insult

I haven’t written a lot about my ME/CFS experience (at least, not outside of a medical diary), because I’m wary of putting too much personal info on the internet. I just want to say it has been hard. The reason I bring it up is that I’m tremendously grateful to Ed Yong, as he heads on sabbatical, for the work he has been doing for people with Long COVID and ME/CFS.

🧵Some personal news: I’m taking a 6-month sabbatical, starting now. These past 3 years have been the most professionally meaningful of my life, but they’ve also deeply broken me. The pandemic isn’t over, but after a long time spent staring into the sun, I need to blink. 1/

— Ed Yong is not here (@edyong209) September 30, 2022

Yong’s recent piece reflecting on the attention Long COVID has brought to the ME/CFS community is so helpful in understanding what has been such an isolating illness for so many. Cort Johnson writes about Yong’s reporting.

Back in July 2020, Yong was one of the first to report on long COVID and has consistently included ME/CFS in his reporting. In Sept. 2021 he reported that “One of the biggest misconceptions about long COVID is that it is entirely new… (and that) Long COVID shares traits with chronic illnesses including ME/CFS, fibromyalgia, mast cell activation syndrome (MCAS), and dysautonomia including postural tachycardia syndrome (POTS).”

These are illnesses that are massively overlooked and underfunded. They are misunderstood. If COVID had not come along as the force that it is, ME/CFS would still be in the shadows. Most likely, The Atlantic wouldn’t be funding well-researched journalism on the subject. As terrible as it may sound, for people with post-viral illnesses, COVID may have ben a blessing in disguise. The world seems to be finally waking up to the reality of these illnesses.

A friend I met during my struggles pointed me to this video from a 2-part episode of the Golden Girls that featured Dorothy grappling with post-viral ME/CFS. The episodes were inspired by one of the creators of the show’s own experience with disease. The shows aired in 1989, and nothing has materially changed since then. The treatments haven’t significantly improved, awareness and knowledge from doctors is still low.

Even though ME/CFS has a lower quality of life than most cancers, sympathy and support for those living with it is very often in short supply or absent entirely. It was into this world that Ed Yong trod and I’m not surprised that he now needs a break. Seeing the human need, so often ignored, is startling and then draining. I thank Yong for his reporting, his insight and his courage and wish him well in his time off.

← Previous Sophists and Frost Giants A post caught my eye the other day that seemed to encapsulate the state of news and opinion in the modern age. Next → Happy to see that a 2.0 beta of my all-time-favorite Mac notes app Bear is going to come out this week. I’ve been waiting a while on this one

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