Some Things I’ve Read Recently: Anil van der Zee on Sex, “Mold Warrior” Johnson, and a Rant Against the Word “Journey”

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.

#anilVanDerZee

In Protocol for Long COVID Exercise Trial, Investigators Advocate Lying to Participants

By David Tuller, DrPH

Researchers are planning yet another trial of a rehabilitative exercise program for Long COVID—but, in this one, they propose to lie to all the participants about the nature of the study and the intervention being investigated. BMJ Open has recently published a paper called “Pursuing Reduction in Fatigue After COVID-19 via Exercise and Rehabilitation PREFACER: a protocol for a randomised feasibility trial.”

The intervention, called COVIDEx, is “a novel, remotely delivered, multimodal rehabilitation programme specifically designed for Long COVID fatigue.” According to the investigators, “COVIDEx integrates patient-centred strategies, including energy conservation techniques, cognitive behavioural approaches and structured pacing principles, to mitigate PEM [post-exertional malaise] risks while improving functional capacity.”

The investigators, largely from Western University in London, Ontario, indicate that their clinical trial uses a “modified Zelen design.” This refers to a controversial approach outlined by Marvin Zelen, a Harvard biostatistics professor, in a 1979 paper in the New England Journal of Medicine.

In Zelen’s design, trial participants are not consented before randomization. After randomization, only those slated to receive the experimental intervention are informed about it and consented. The members of the control group receive standard care and only after-the-fact are they informed that they had been enrolled in a clinical trial. At that point, they are retroactively asked for consent to use their data.

The rationale for not telling some participants that they’re in a clinical trial is that depriving them of this knowledge eliminates the possibility of certain kinds of bias. However, this use of deception obviously raises serious ethical questions. However, at least those who receive an experimental intervention are alerted to that salient detail, and given the chance to accept or reject the opportunity to be in the trial before undergoing treatment.

In the case of the new exercise trial, the “modifications” in Zelen’s design create more headaches for ethicists. The investigators, it seems, plan to lie to everyone, not just the half of the sample in the control group, as would happen under Zelen’s original proposal.

Here’s the plan: “All patient participants will be informed that they are part of an observational study designed to follow the natural progression of Long COVID and to evaluate the costs associated with standard post-COVID-19 treatments. This includes both the COVIDEx and usual care groups…A research coordinator or assistant will telephone each participant on completion of the participant’s study procedures and disclose the deception to participants.”

It is hard to understand what would justify this sort of flagrant deception. COVIDEx is not a “standard post-COVID-19 treatment.” The study describes it as a “novel” intervention—the opposite of standard. If it were standard, it wouldn’t need to be trialed.

In other words, the investigators are testing an experimental intervention on patients without telling the patients they’re being experimented on. This approach certainly seems to constitute a violation of research principles on informed consent, including those outlined in the Declaration of Helsinki. (The Declaration of Helsinki is an international human rights document that was created in the wake of Nazi atrocities to protect the rights of human research subjects.)

The investigators provide the following explanation for their decision: “Blinding patients to the presence of the experimental group will mitigate the effects of feeling disappointed, frustrated or discouraged about being assigned usual care. This is important given that the study is also assessing fatigue, a subjective, patient-reported outcome measure. This approach can also reduce the likelihood that participants in the usual care group begin self-motivated programmes trying to mimic the intervention.”

This explanation makes some sense. That is, if you overlook the fact that the investigators are delivering an experimental intervention to patients and lying about it in order to achieve their research aims.

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A focus on post-exertional malaise

Which brings us to post-exertional malaise (PEM). Unlike the many Long COVID exercise trials that ignore PEM, as recently reported by The Sick Times, these investigators recognize its significance and place great emphasis on monitoring for PEM among participants. The intervention’s design seeks to minimize the possibility that the program will trigger PEM.

The attention to PEM is welcome. But the bottom line is this: The investigators are trialing a rehabilitative exercise intervention among a patient population in which a significant proportion experience PEM. Informed consent involves telling participants about potential risks of an intervention. Is there a plan to tell those receiving the intervention of the risk that it might trigger PEM in susceptible individuals? Doesn’t sound like it, since they’re being told the intervention is “standard” treatment, as far as I can tell.

In a rapid response published this week, Todd Davenport, a professor of physical therapy at University of the Pacific in Stockton, California, and colleagues, offered a solid rebuttal to the protocol. As they write, the proposed trial “undermines informed consent, increases risks for harms, exploits the vulnerability of participants, and erodes trust in science and health care, all while exploring a question that already has been asked and answered satisfactorily enough to inform clinical recommendations.”

Here’s a key passage:

“Physical activity is a common trigger for post-exertional malaise (PEM), which is common in people living with long COVID. PEM involves an impaired recovery response from exertion that is distinct from deconditioning. The hallmark of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is PEM. Exercise is no longer recommended in contemporary clinical guidance for ME/CFS, because an accumulation of evidence from research and lived experience suggests it is likely to cause avoidable harms. Exercise prescription without adequate safeguards for PEM even may be considered negligent practice. The protocol acknowledges people living with PEM often worsen with exercise dosages that may be appropriate for other conditions. Several of the authors of this protocol also previously published a systematic review acknowledging risks of exercise in people with long COVID related to PEM. However, the authors did not adequately justify using deception in this study even while clearly acknowledging the risks of the intervention they proposed.”

Davenport and colleagues are right. It is not sufficient for the investigators to tell themselves—and protocol readers—that their methodology includes safety mechanisms to protect participants from PEM. Whether or not that is true, it is irrelevant to the question of consent. Research subjects have the right to decide for themselves if they have any interest in undergoing a “novel” intervention, and they have a right to be informed of any potential risks. Period.

#postExertionalMalaise

⚠️ Attenzione alle truffe: se qualcuno ti chiede di "cambiare temporaneamente" l'indirizzo email del tuo account Mastodon, NON FARLO.

Il truffatore si spaccia per un amministratore di server e chiede agli utenti di cambiare temporaneamente l'indirizzo email del proprio account Mastodon con un indirizzo fornito dal truffatore stesso. Questa è una truffa, non fatelo.

I veri amministratori NON ti chiederanno MAI di farlo.

social.growyourown.services/@F…

@fediverso

Fedi.Tips 🎄

2025-12-12 19:10:16

⚠️ Scam alert: if anyone ever asks you to "temporarily change" the email address on your Mastodon account, DO NOT DO THIS.

There is currently a scammer posing as a server admin telling people to temporarily change their Mastodon account's email to an address supplied by the scammer. This is a scam, don't do it.

Real admins will NEVER ask you to do this.

You can see examples of this scam in the thread at ohai.social/@redsad/1157080301…

(Thanks @markwyner for the warning about this! 🙏 )

#FediTips

captain acab :antifa: (@redsad@ohai.social)

Attached: 1 image is this for real? someone said they accidentally reported my account and said to contact this person now they say they want me to change my email address edit: confirmed scammer. do not respond to a text like this

^ohai.social