Some Things I’ve Read Recently–Aboriginals and Long COVID, Tips for Disability Claims, Profile of Ron Davis

By David Tuller, DrPH

Failure to address Long COVID in Australian Aboriginal communities

Croakey Health Media is a small but feisty Australian news outlet that covers social and structural inequities in healthcare. Croakey recently published “a call for action to address Long COVID in Aboriginal communities,” which focused in particular on the situation in the Northern Territory (NT). The NT, the largely rural state that occupies the vast northeastern sector of the continent. is home to many Aboriginals. (The call to action was written by Dr Andrew Nguyen, the public health registrar and infectious diseases physician at the Aboriginal Medical Services Alliance Northern Territory.)

Here’s a key section:

“Long COVID remains under-recognised, under-diagnosed and under-resourced. And nowhere is that more evident – or more concerning – than in the Northern Territory.

“In a recent briefing to NT health practitioners, I emphasised that we simply do not know the true burden of long COVID among Aboriginal people.

“This knowledge gap is not because long COVID is rare – it isn’t.

“Relevant diagnostic tests help assess severity and ruling out other causes, but the reality of remoteness means that some of these tests are not as accessible as they are in metro areas.

“The NT remains the only jurisdiction that has never established a dedicated long COVID clinic or services. Without diagnostic access, conditions remain invisible. Without visibility, there is no data. And without data, it is difficult to respond.

“This is a clear example of how structural inequity in healthcare access directly shapes disease burden in Aboriginal communities, where the diagnostic challenge is even greater.”

You can read the whole article here.

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Tips on filing disability claims for ME/CFS and Long COVID

Miriam Tucker, an experienced medical journalist, has written an excellent and helpful article for Medscape titled “How to Help with ME/CFS and Long COVID Disability Claims”—one of three that Tucker has written for the news organization after a virtual conference held in October by the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.

The latest piece, which covered a presentation from a Florida disability attorney, Edward Dabdoub, noted that “detailed notes, objective testing, and legal assistance if necessary” are key to successfully obtain gdisability benefits in cases involving ME/CFS and Long COVID. Here’s an excerpt:

“‘When someone is struggling from a disability and they have to submit a claim to an insurance company, it’s automatically an uneven playing field, the ultimate David vs Goliath. The person who is struggling with a serious medical condition is not equipped to take on a well-oiled insurance company that’s willing to put a lot of time and resources into shooting down those claims, hoping these people just give up and go away,’ Dabdoub explained.

“The insurance companies have long tried to cast ME/CFS as purely subjective and lacking objective evidence, or as a mental illness for which the duration of benefits may be more limited. Now they seem to have ratcheted up this approach as the number of these claims have increased with the emergence of long COVID.

“‘As they get more claims for these conditions, it seems like the insurance companies are shooting them down even more. So we’ve had to refine internally how we respond to those denials when a client comes to us,’ Dabdoub said.”

You can read it here.

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Stanford geneticist Ron Davis seeks treatments for his son’s disease

Ron Davis, a prominent geneticist at Stanford Medicine, is well-known to longtime members of the ME/CFS community for dedicating his life to unlocking the puzzle of the disease that has so profoundly impacted the life of his son, Whitney Dafoe. Others may be less familiar with his work. In any event, Stanford Medicine Magazine has recently published a profile of Professor Davis that covers his background, his son’s history, and his research efforts.

Here’s a short description of a couple of the key hypotheses that drive his work:

“Davis has developed a theory that infection permanently changes a specific aspect of metabolism in people with ME/CFS…In this hypothesis of the root cause of ME/CFS, immune cells make a certain product of metabolism in response to infection. This metabolite, known as itaconate, ramps up other parts of the immune system’s virus-fighting abilities, but it also shuts down the normal energy production pathway in favor of one that’s less effective, which is part of the reason we feel tired when we have a cold or flu. Normally, this switch is short-lived, but in ME/CFS it could become permanently stuck in the lower energy mode. Several molecules are involved in this process and Davis believes different parts of the process might go wrong in different patients.

“Another hypothesis…centers on the body’s production of nitric oxide, a small molecule with many important roles in biology, including regulating the brain-signaling molecules dopamine and serotonin, levels of which are often out of whack in ME/CFS. Davis and his colleagues have also found mutations in several genes related to the metabolic and nitric oxide pathways in people with ME/CFS.”

You can read it here.

#australia #longCovid #miriamTucker

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