By David Tuller, DrPH
Anil van der Zee says “Fuck M.E.”
One aspect of ME and ME/CFS that receives perhaps too little attention is the impact on someone’s sex life. Engaging in sexual activity takes a significant amount of energy—and is therefore likely to trigger post-exertional malaise for many with this illness. Especially for those severely affected, for whom taking a shower is a herculean task, maintaining a regular sex life is not really a viable option.
My friend Anil van der Zee, who often posts beautiful photos and videos and heartfelt essays, has taken on this issue in his most recent post, called “FUCK M.E.”
“It is now almost 13 years since I last had sex. It feels unreal that it has been that long. I became ill at 28, right in the prime of my life. I am 47 now, and I feel like I am missing out on the most sexually active years…
There is, of course, still masturbation. But even that is tricky. I have to be extremely careful not to overexert myself, and when I am doing very poorly I have to abstain from it because it can set me back for days or longer. The problem is that my libido has not really changed. So I have a body with needs, but I cannot act on them. Having a body and mind that want sex, even with myself, but cannot have it, resisting it becomes an overexertion in itself.
“Right now all I can do is think and fantasize about sex, about past moments and future possibilities. I hope that one day I will again be able to enjoy one of the greatest pleasures we are given.”
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Profile of a “mold warrior”
As many in the CFS, ME and ME/CFS space know, Erik Johnson is a patient from the Lake Tahoe outbreak in the mid-1980s. That was the event investigated by the US Centers for Disease Control and Prevention, which infamously ended up dubbing the condition “chronic fatigue syndrome”—a name almost universally panned as dismissive and insulting in subsequent years.
Erik has persistently maintained that mold, and not a viral infection, was the cause of the Lake Tahoe outbreak—he has dubbed himself “the mold warrior.” He routinely accuses scientists, journalists and others of ignoring the Tahoe outbreak and the evidence in favor of the mold theory. (I am a frequent target of his criticism; to be clear, I have never denied the possibility that mold could be a factor.)
Now Moonshine Ink, a publication covering the Lake Tahoe area, has published a profile of Johnson. For those interested in his story, it’s worth a read. Here’s an excerpt:
“Johnson believes his sickness developed from exposure to toxic mold in Germany as well as in Tahoe; he had been in all the buildings associated with the local outbreak — Truckee High, North Tahoe High, and the Hyatt, where he had worked as a cook. At the time, this condition was called building-related illness, which later became known as sick building syndrome.
“However, Johnson said that Peterson and Cheney [the two local doctors treating patients with the illness] did not subscribe to his toxic mold theory. They believed the culprit was two-fold: a yet undiscovered virus that reactivated the EBV and made it chronic, and possibly a new strain of the herpes virus for those who were EBV-negative.
“The exact cause of CFS is still under debate in the scientific community.”
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Don’t call it a ‘journey’!!
Peter Swenson, an emeritus professor emeritus of political science at Yale University, has penned an impassioned essay for STAT slamming a widely used euphemism for describing people’s medical experiences. The piece is titled “I have long Covid. Don’t call my chronic disease a ‘journey.’” The subhead: “I would sooner call the experience a bad trip.”
In the article, Swenson notes that use of the word “journey” to frame medical experiences has metastasized in recent years. As he reports, “According to University of Pennsylvania linguist Mark Liberman, the word’s usage in the biomedical literature rose slowly and steadily from a low rate in 1990 to 2010, and then exponentially until 2024, by a factor of over 20.”
Here’s a key passage about use of the offensive word: “Sugarcoating my bitter pill, a chronic disease, by calling it a “journey” might sweeten it for you, but not for me…The treacly word triggers my gag reflex, and I’m far from alone. This should give users of the word pause. Virtually every one of 352 reader comments on a 2024 New York Times article by Lisa Miller called ‘When Did Everything Become a Journey?‘ expressed varying degrees of displeasure about the word’s use in both medical and non-medical contexts. The five most recent comments included ‘cringeworthy,’ ‘repulsively fussy and flowery,’ ‘pretentious,’ and ‘yoga babble.’”
I’m sure many will be able to relate to Swenson’s beef. The piece is behind a paywall, but STAT allows readers to register and read some articles for free.