Wired Magazine: The Painful Truth About Long Covid by Alan Levinovitz, 2026

[MrMagoo]

I want to pick up on a comment @Sean made about calling for investigations into threats made to researchers etc. because it’s actually a really important point.
Even on a basic level, bullying thrives in the dark until a lift is shine on it. And most people in the world are reasonable and don’t think anyone should be subject to threats, violence etc for their beliefs.
Also, as we know, randoms on the internet do bad stuff every day. It doesn’t mean the ME or LC “community” sanctions it, supports it or even knows about it.

I keep putting “community” in inverted commas because I haven’t yet dug into ALs definition of community and I’m unsure if I agree with it yet.

 

[Mij]

Brief reply: Donnino designed his trial with three arms specifically to address the sham brain retraining question. When his results come out, we should discuss. I predict that if they are positive, people will be completely unwilling to accept them, no matter what the trial design or what the data says. If they are not positive, I'll say, "That's good evidence against what I believed."

It appears that he is weighing heavily on the outcome of a Donnino study, and yet in his article title "truth" contradicts his own words. He's strongly focused on his own beliefs.

Did Donnino consult with knowledgeable ME clinicians with over 25+ years experience?

We know Al didn't.

From Al's article:" "I’ve spoken with a dozen formerly bedbound sufferers who credit brain retraining with partial or full recoveries from severe long Covid and other chronic conditions"

 

[MrMagoo]

I need to look into the definitions of “science/biomedical” as well as “community”

I suspect part of the issue is a reductive “science has been looking at LC (and further, ME) and turned up nothing” joined with “and the “community only want science and won’t countenance anything else”

1.What is “science/biomedical”?
2. What is it to AL
3. What is it in the article

(and further, why? How? Who benefits? What’s missing? What’s foregrounded?)

Because as we here know, the “science/biomedical” might be easily defined as a category but is a wide paradigm with a lot of differing opinions. It’s certainly not a quid pro quo like
“tests showed X therefore X is proven; everyone agrees”
“Results show T Cells did X therefore X is proven; this is fact”

and this website is testimony to that.

We know scientific explorations (especially in LC and ME) include a lot of dross, stuff which shouldn’t have got past funding, stuff that has quite obvious limitations, clutters up search results investigating little yet announcing lots, small studied with promise which should go on to larger ones in an attempt to replicate, expensive ones that are still trying to get funding, stuff like SequenceME which I suspect will help advance the science around more than just LC/ME due to gene decoding and analysis…)
which comes back to “synecdoche” which is a Chomsky term I think, don't quote me, it just means “one part to represent the whole”.

One junk paper doesn’t mean all of science/biomedical is junk.
One good paper doesn’t mean all of science is great.

Everyone knows this, we’re all adults who live on earth.

So it doesn’t really shore up AL’s argument (the argument I assume is “let’s consider untested cures because some people liked them and science failed to come up with the goods so far” I paraphrase)
we can all tease out failures in good stuff and successes in bad stuff.

Which is why it bears explaining in depth something that the average reasonable person already knows. Because this focus-pull happens in the article and the discussion here. AL- Science fallible - see example. S4ME - does a deep dive on there why’s and wherefore’s of the example (because…S4ME) argument gets all messy due to mismatch of styles.

Which is also why AL’s use of “monomaniacal” stood out.

 

[MrMagoo]

That intro (eta - by the podcaster) is very hyperbolic, and I personally feel AL uses hyperbolic language as part of his narative device.

Also-

Me-rail

The reason why AL’s piece reminds me of the Revolutionary Communist Party (that RCP, not the other one) isn’t a coincidence. If you were/are familiar with their output and in particular Living Marxism, the comparators are

-moral panics (incl. media)
- contrarianism
- suspicion towards “victimhood” frameworks
- being the knowledgeable outsider sitting outside of consensus
- if you’re not for us, you must be against us
- “secret knowledge” and willing to speak “the truth” in a society which does not want to face it/hear it

Turns out selling Living Marxism then studying Chomsky all before 16 wasn’t a waste of time, but does explain why this feels like a very long 6th Form debate

 

[Sparkly Unicorn]

For someone like me who has to look up words like semiotics, I can't do this sort of analysis, I just know it feels all wrong. I know it's blinkered and coming from a privileged outsider perspective and chooses to judge and categorise in derogatory ways as an exercise in othering, rather than listen and learn

A feeling response is valid. It's embodied and based in direct experience and inferred experience for others.

There is a lot of pressure on us as patients to respond 'rationally' without emotion or through critique. To not have 'irrational' thrown at us. Why this hits hard is it's often how we have to behave clinically too.

But our knowledge really is deeply felt through experience and that's it's strength too. Some would argue that is how truth is really known. As a philosopher AL should understand that knowledge distinction and epistemology.

We also know that what AL proposes is dangerous for others - and it's ok to be outraged at that.

Interestingly in publishing girl (woman) rage is in vogue with many popular female writers bringing that to the fore. If only ALs agent and publisher were more on trend instead of platforming misogyny and ableism.

 

[Sparkly Unicorn]

This book, I would buy!!!!!

Ha. I am actually writing a book (very slowly) ATM. It covers many a feminist theme in medicine.

 

[dave30th]

Is he referring to looking up some stats or something else when he says 'I've discovered' as if it's a new finding? Who does he imagine or know these people 'looking on' are?

I think the metaphor of "how the sausage gets made" is more popular in US? I think he means that now people are seeing what he's seeing--that the public isn't getting the full scientific story because hostile patients are blocking progress and all the other sociocultural stuff he's seeing. The responses he has gotten online purportedly reveal this dynamic at work so many people are seeing it. I'm sure he believes that 100% and thinks no one except those invested in LC and ME being biomedical would see anything different in the way he has responded.

They completely failed to deliver a single serious example

Well, Trudie Chalder did report that she was heckled once at a conference!!!! The nature of the heckling was not specifically described, if I remember, so maybe it was particularly loud heckling. (I was at the tribunal hearing.)

But beyond that, the tribunal only looked into claims of abuse/harassment against the PACE authors. So the finding is really important but does not apply to others--say, Wessely--who were not co-authors but also reported stuff.