#anil-van-der-zee — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #anil-van-der-zee, aggregated by home.social.
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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.
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In a Compelling Documentary, Five Doctors Discuss Being Sick
By David Tuller, DrPH
*This is a crowdfunding period at University of California, Berkeley. If you appreciate my work and would like to make a donation (tax-deductible to US taxpayers) to the university in support of my position, here’s the link: https://crowdfund.berkeley.edu/project/46120
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I first connected with Anil van der Zee, a severe ME patient in Amsterdam, when he reached out almost ten years ago to invite me to talk at an event he was organizing in Amsterdam. In his former life, Anil was a ballet dancer. Now, from his bed, he creates compelling and often visually stunning videos about various aspects of life with ME, and related issues.
In this new documentary, Anil talks with five doctors about living with ME and other chronic illnesses–and about how their personal experiences have altered their perspectives on the medical field and the provision of health care. I have posted it below, along with Anil’s introduction. (I wrote a story about doctors with Long Covid for Codastory.com in 2022.)
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Doctors as Patients…Anil van der Zee
In this film, five medical doctors open up about living with #PAIS/#IACC, conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before, not just in the Netherlands but possibly worldwide!
They speak candidly about their experiences with illness, what they were taught (or not taught) in medical school, and how that shaped their own treatment decisions—sometimes even leading to harm. They reflect on how becoming patients themselves radically changed their views on medicine, science, and what needs to change in healthcare. It’s raw, honest, and incredibly insightful—for medical professionals, researchers, politicians, and patients alike.
This project was a true labor of love. We had zero budget. Three amazing cameramen, a few behind-the-scenes heroes, the MDs themselves, and those from the community who shared material for the film—all volunteered their time and energy. It wasn’t easy: illness and #PEM often got in the way, but we somehow made it.
We’re amateur filmmakers (and I’m definitely the biggest one!), so don’t expect a slick Hollywood production. The real professionals here are the doctors—whose powerful voices, shaped by both medical training and lived experience, definitely need to be heard.
I invite you to watch, leave a like, drop a comment on YouTube to help boost the algorithm, and share it far and wide. This is more than a film—it’s a message the world needs to hear and see!!!
Their stories will hopefully change how you think about medicine—don’t miss it. Watch it, feel it, and let it shift your perspective, especially now that PAIS/IACC conditions have become an even more urgent health issue since the pandemic. Their voices matter more than ever!
The film has English and Dutch subtitles. If you want to translate it to another language let me know.
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Some Things I’ve Read Recently…in STAT, The Sick Times, Van Der Zee’s Blog
By David Tuller, DrPH
Embedding ME/CFS in NIH’s RECOVER initiative
Ian Lipkin is a well-known professor of epidemiology at Columbia University and director of the Center for Solutions for ME/CFS, funded by the U.S. National Institutes of Health (NIH). In a recent opinion piece for STAT, he and ME/CFS patient advocate Elizabeth Ansell, the founder and executive director of a campaign slugged #NotJustFatigue, call for the NIH’s RECOVER initiative, which investigates Long Covid, to fully embed ME/CFS into its future plans.
The authors note that their appeal for better integration of ME/CFS into the RECOVER mission is aligned with recent recommendations from Congress as well as scientific and medical experts. They also highlights the many challenges that people with ME/CFS can face in trying to navigate an uncaring health care system and deal with dismissive or unsympathetic clinicians.
Here’s a key passage:
“RECOVER has the potential to be a model for innovative, patient-centered research. But for that to happen, NIH must listen to Congress, the scientific community, and the millions of individuals waiting for hope. Including ME/CFS within RECOVER’s scope is not just an opportunity — it’s an imperative. With hundreds of millions in funding and the largest-ever cohort of people with post-viral illnesses, RECOVER could provide the answers that ME/CFS researchers have sought for decades. NIH must seize this moment to lead.”
This is a smart message. But it presumes the future research will be smart as well. The article could have clarified that not all cases lumped into the Long Covid category are the same and that only a subset meet ME/CFS criteria. For research to be useful, it clearly needs to take these facts into account.
You can read the piece here. (Unfortunately, it is behind a paywall, but there seem to be archived versions out there.)
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Dutch CBT/GET ideologues maintain high media profile
My friend Anil van der Zee frequently blogs and makes haunting videos about his experiences as a longtime severe patient. He also takes stunning photographs from his perch on the bed in his Amsterdam flat. He recently wrote a post about his distress at seeing that leading Dutch advocates of cognitive behavior therapy (CBT) and graded exercise therapy (GET) continue to have a major media presence and significant impact on public debate.
Anil’s work is always worth a read (or a view, depending on the medium). Here’s the opening of his recent post (via Google translate):
“I have read the news reports about the opening of long-COVID clinics for children with mixed feelings. On the one hand, I find the stories of children and young people with long COVID incredibly distressing; they are consistent with what we have seen in ME for decades. Many of those with ME are now adults, some even 60+ years old. I am glad that at least there finally seems to be more help for a small proportion of children and young people with long COVID. Hopefully this will be beneficial to all children and young people with post-acute infectious diseases (PAIZ) or infection-associated chronic diseases.
“On the other hand, I read with pain in my heart that a doctor like Sanne Nijhof is given a large platform in the media. It is doctors like Sanne Nijhof and her predecessor and colleague Elise van de Putte from the Wilhelmina Children’s Hospital (WKZ) who have not only researched cognitive behavioral therapy/graded exercise therapy (CBT/GET) in their FITNET-study, but have also actively promoted and praised this treatment.
“As a result, CBT/GET has been applied for years as a standard treatment for children with ME, while we have known for decades that people with ME deteriorate due to post-exertional malaise (PEM) – getting sicker after minor physical, cognitive, sensory, or emotional exertion – from the buildup of activities that these treatments are based on. It is also important to mention that about 50% of Long-Covid patients meet the ME criteria and therefore also have PEM.”
You can read the full blog post here.
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Information disappears from U.S. government websites
The ongoing dismantling of U.S. government agencies and programs is worldwide news. The Sick Times, the online outlet that covers Long Covid, is tracking how the dismantling impacts this specific domain. The news organization reported the other day on the removal of important online information from government websites. The article’s headline: “Now offline: Government resources about Long COVID as a disability.”
Here’s some of the bad news:
“Several government resources about accommodations for people with Long COVID have become unavailable in the last week, following purges of government websites and datasets under the Trump administration. These pages offered crucial information about rights under the Americans with Disabilities Act (ADA) for people with Long COVID and their employers.
“In 2021, the federal government recognized that Long COVID can be considered a disability under the ADA. Pages and articles on AskJAN, a public-facing website by the U.S. Department of Labor’s Job Accommodation Network, explained how people with Long COVID could use this law to request accommodations that would make their jobs, schools, or other aspects of their day-to-day lives possible.
“As of February 11, Long COVID is no longer included in AskJAN’s directory of disabilities. The website’s Long COVID resources — which previously included information about the disease’s legal status, key symptoms, and suggestions for accommodations — are also unavailable. (View an archived copy of AskJAN’s Long COVID landing page here.)“
You can read the full article here.
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Disclosure: My academic position at the University of California, Berkeley, is largely supported by donations to the university via the campus crowdfunding platform from people with ME/CFS, Long Covid, and related disorders.