Wired Magazine: The Painful Truth About Long Covid

Lou B Lou said:
Reply to Levinovitz on the same Twitter thread:

James
@James6939710330
Wrong, as usual. This trial launched in 9-2022. In 10-2022, POTS was given its first ICD code. Shortly after it lost rare disease designation, and the regulatory, financial, and clinical advantages that come with orphan status. That’s why it was stopped after interim analysis.


James
@James6939710330
'It remains disputed whether LC is b-cell mediated. The drug might not have worked. But to say ‘Hard to imagine a pharma company canceling a trial of a life-altering drug for a condition that affects millions of people’ is incorrect; the financial proposition changed.
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I'm pretty sure that's irrelevant and misses the point.

We've discussed the interim results on here and that they suggested a lack of efficacy. Some of us have also discussed that the Sick Times has at times done a poor job at reporting on trials both here and for BC007. Some have even written E-mails to them saying that they think it is irresponsible.

I guess there's always an interpretation bias somewhere, as Levinovitz has shown us, but not everywhere. Writing articles on something based on anecdotal stories without actually discussing the data does remind me of something.
 
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Levinovitz seems to have a strange idea of what biomedical means. The brain retraining people are keen to emphasise the biomedical basis of their training - "neuroscience". Levinovitz seems to suggest that somehow you can fit 'demons' into neuroscience. Maybe as a religious person he thinks there is a 'soul' that can tweak the synapses. But even if there was it would be biomedical because biomedical covers anything relating to health that can be described by science.

A US neurologist friend of mine some years back was amazed to find that 80% of his students were religious believers, creationists even. I am not sure that the supernatural (but natural) cast of Levinovitz's approach would go down very well in Europe.
 
Chandelier said:
I think Levinovitz is a smart guy who can write really captivating stories, but I feel like he’s got carried away by his own story-telling.
I don’t assume that he meant to harm people.
I could imagine, however, that this aspect, this reality, came crashing in over him in the last couple of days, thanks to all the outstanding replies from the community.

I wouldn’t want to be in his shoes right now.
How would you continue in his situation with a book release on the horizon?
Is there a realistic way to calm down and come to ones senses under these circumstances?
Or is he going fully deaf and doubling down?
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I wouldn’t assume the response from long Covid or ME community has any effect whatsoever on his plans to release book. It’s a drop in the ocean. The exposure in Wired will delight his publishers.

There’s huge acceptance of woo nonsense thinking. Look at the rise of the wellness industry. ‘Self care” is now something you are supposed to be doing all the time because everybody “has anxiety”. Tech / creative culture promotes self optimization. Brain retraining fits perfectly into this culture. Imagine it would be very well received by the general public.
 
Braganca said:
I wouldn’t assume the response from long Covid or ME community has any effect whatsoever on his plans to release book. It’s a drop in the ocean. The exposure in Wired will delight his publishers.
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I agree.
I was approaching this scenario from the fact that he already made a turnaround by 180° once in the past and, in my personal assessment, stands on very shaky grounds with his current… whatever this non-natural stuff is… hypothesis:
Levinovitz in a podcast said:
But unfortunately, as we know, psychology — that is to say non-biological supernatural things — that is not natural, so a concept, a belief, a fear can cause physiological problems.
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So in the very unlikely scenario that he actually listened and learned and realized from the feedback that points out the harm his actions have already caused, he would have set himself up with the worst possible timeline.
And making a comeback out of that mess would take a long time.

But again, I agree, he has himself perfectly setup for the much more likely case that he’s going for a career in the functional medicine lifestyle realm.
Maybe even as part of MAHA – or is he overqualified for that due to his knowledge in theology? :emoji_thinking:

Braganca said:
The exposure in Wired will delight his publishers.
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Yes, what I don’t know is whether dumping journalistic standards will turn out to be a win in the books of Wired?
 


“I also believe that so-called "mind-body" therapies are quite difficult to trial — this is a longer discussion, but an important one — in the same way that all forms of therapy are difficult to trial, because they depend on trust and therapeutic alliance. In the real world, people want to choose the gender of their therapist, for example, but they can't in an RCT of a therapy. Pharmaceuticals aren't gendered, so that's not an issue.”
 
Whatever treatment or approach is difficult to test becomes a canvas on which to draw beliefs in ever more detailled ways.

Well, given that there routinely seems to be a therapeutic effect — often "life-changing" for pharmaceuticals that subsequently fail blinded trials — I think that's evidence in favor of pursuing whatever would explain that effect.
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People aren't being cured miraculously: they learned to stay within limits imposed by the disease, and when they genuinely believe that these limits no longer need to be respected and that it's possible to safely do more, they can make quite drastic apparent improvements, often influenced by high hopes and euphoria (which are helpful in a growth phase like this). But if the patient is not actually cured, reality will eventually set in again.

There is reserve of some kind, which allows me to exceed the sustainable limits of the illness for some time.

Over time patients understand the dynamic and grow tired of the cycle of hype and false hope followed by disappointment.
 
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Twitter has the advantage for people with weak arguments that posts are so short and discussion so disjointed that all you end up with is algorithm driven ragebait. He's made a choice to spend his time there rather than here. Read into that what you like.
 
Paul has joined . . . not sure if these two should be merged. At least Alan had the chutzpah to join us.

"This person's story is so sad, and a terrible indictment of medicine (& militant charities) that deny that the brain is core to understanding and recovering from persistent physical symptoms is the first start. Stop writing petitions and read thishttps://tandfonline.com/doi/full/10.1080/02813432.2026.2633765

Thanks
@AlanLevinovitz "
 
"It was important for me to engage with critics of my WIRED piece about long Covid. I think journalists owe the public and their critics this kind of engagement, especially on a topic as fraught as this one. But at this point I think I've said everything that's useful. I'll be stepping away from this specific topic on social media for the next few months.

If you are interested in how it has all played out, I encourage you to go through my timeline. You'll see my posts, which include links to longer critiques of my piece, as well as my replies to people on here. They also include threads laying out more extended discussions of topics that couldn't get adequate treatment in the piece."
 
Jaybee00 said:


“I also believe that so-called "mind-body" therapies are quite difficult to trial — this is a longer discussion, but an important one — in the same way that all forms of therapy are difficult to trial, because they depend on trust and therapeutic alliance. In the real world, people want to choose the gender of their therapist, for example, but they can't in an RCT of a therapy. Pharmaceuticals aren't gendered, so that's not an issue.”
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Interesting how gender was brought into this tweet even though it’s not an issue and not relevant.
 
Mij said:
"It was important for me to engage with critics of my WIRED piece about long Covid. I think journalists owe the public and their critics this kind of engagement, especially on a topic as fraught as this one. But at this point I think I've said everything that's useful. I'll be stepping away from this specific topic on social media for the next few months.

If you are interested in how it has all played out, I encourage you to go through my timeline. You'll see my posts, which include links to longer critiques of my piece, as well as my replies to people on here. They also include threads laying out more extended discussions of topics that couldn't get adequate treatment in the piece."
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Here I am, I wrote the piece, I welcome debate and discussion but I’m not willing to discuss what I wrote, I’m v busy now so not going to discuss it.

Just keeps happening doesn’t it?
 
"people want to choose the gender of their therapist, for example, but they can't in an RCT of a therapy"

Rubbish. You can set up a trial in which patients can choose the gender of their therapist. No issue there. As long as they are randomised to one type of treatment or a control scenario.

Levinovitz seems to have no real idea about any of this. He is just repeating red herrings served up by the chief Braintraining chef.
 


“Engage critics: you immediately insulted me and told me I must have not done my research even though I have been writing on this topic for years.Meanwhile, your article doesn’t even mention huge trials into the very things that your article alleges that “we can’t talk about.”
 
Nightsong said:
It's all largely neuro-babble, not neuroscience. Any real expert in the field would find most of it laughable. Like most modern manifestations of pseudoscience they adopt superficial scientific forms, but lack any of their substance.
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Sadly, I don't think that's true anymore. In fact, everything I have seen over the last decade or so suggests to me that the vast majority of physicians find this great, and have no meaningful objections to any part, let alone the whole. This stuff used to be on the other wise of the road. Then it was down the road. Then down the hall. Not it's behind the same desk as real, scientific medicine. This stuff gets promoted by medical journals and is applauded at medical conferences.

Medical experts can now shift from real medicine to weird woo woo like this, and back, without finding anything wrong about it. It's been completely normalized, and the stakes are so big that it will take years, if not decades, of failure before it's even acknowledged to be a failure. Sunk cost and politics.

The shift wasn't just Levinovitz's. Or Garner's. The creep of pop psychology / mythology into health care has reached an accelerating point, and it seems like Long Covid provided a lot of fuel to it, despite plainly debunking all of it. Humans are so damn wild, man. Just impossibly weird.
 
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