Honestly, the last year has been one of the worst years of my life. Somehow - maybe it was the maraviroc, maybe it was dumb luck - I finally *mostly* recovered from my Long COVID symptoms (recent fainting episode notwithstanding), and then my wife had multiple strokes, got hospitalized for a month, had part of her skull removed, and wound up even more disabled than I was at my worst.
For that reason, when
@AlanLevinovitz emailed me a few months ago and asked me to talk about Long COVID, I missed it. By the time I got to it in my inbox, he had already finished his piece. But even if I had responded in time, I wouldn't have spoken to him - a quick search of his twitter history indicates that, despite not having read seemingly any of the scientific literature, he has strong opinions about what Long COVID is and who has it. He can cite no evidence for his claims, but felt it worthwhile to declare that "60-80%" of Long COVID is psychosomatic. A range that is somehow both bizarrely specific, and entirely fabricated.
I knew exactly the type of piece he would write before I read it, because he's not a neutral observer here. I don't know what his incentives are, but regardless of his intentions, I can tell you exactly how that piece in
@WIRED functions: as free advertising for a cottage industry of alternative medicine scammers that prey on some of the most vulnerable people in society.
Here's what Levinovitz conveniently doesn't tell you (I wonder if his editors know about this stuff, assuming this was even edited - a 10 second search can reveal extensive articles on MEpedia and other websites detailing this; even wikipedia covers it a bit):
Like most alternative medicine scams, brain retraining is based on taking something legitimate from medicine (in this case, neuroplasticity and CBT) and putting a spin on it that involves pseudoscience and a money-making scheme.
I never knew these folks existed until I developed Long COVID and became exposed to this space, but they've operated for years. For a couple decades at least they've preyed on people with ME/CFS, and in more recent year, have set their sights on profiting from Long COVID.
There are far too many examples of them for me to name them all. Kennedy, the quack Levinovitz profiles, charges only a couple hundred dollars an appointment - which, for nonsense, is still far too much IMO - but others are worse.
There's this guy Toby Morrison who runs "CFS Health". He and his website look like a lame Tony Robbins ripoff, complete with high pressure sales tactics. He sells a $500 monthly membership and offers "coaching".
There's the Lightning Process, which costs somewhere around $900-$1500 for a course. There's ANS Rewire and the Gupta Program, which are a series of online videos you pay $500 to access. There's DNRS, which sells $2K seminar tickets.
A lot of these programs have a sort of multi-level marketing feel to them as well. The Gupta Program gives you a pathway to become an "official" Gupta coach. Primal Trust offers a way to refer people into the program. etc.
These programs use social media to ensnare sick people into emptying their pockets. They operate a web of YouTube channels and Facebook groups, some of which I'm in. Below, I'll paste a screenshot of a moderator in one of these groups who seems to be implying that people with chest pain who go to the ER are wasting their time.
Which is maybe the more important point: This stuff isn't just a money-making scheme. It's dangerous and potentially deadly. Essentially, the core tenant is that the symptoms are all in your head, driven by an over-active nervous system, and you just need to think your way out of them.
We have, in fact, run this experiment before. It was called the PACE trial: the idea that these patients are deconditioned and frightened of activity, curable with exercise and a change of beliefs. Patients reported in droves that the exercise made them sicker (74% in one survey) and over time the major bodies reversed course. The CDC now opens its overview of ME/CFS by stating that its a biological illness. What Levinovitz is calling a brave, suppressed paradigm is a long discredited and dangerous theory given a different name.
Although it's lengthy, his article reads like something I might have written as a freshman in undergrad. He just didn't do the work, didn't follow the money, didn't talk to the right people. He doesn't look for the harm caused, or who profits from it.
And so what we wind up with is a lengthy advertisement for alternative medicine in a major publication. I doubt the industry could have bought anything better.