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

[dave30th]

The outing of the person accused of harming science--by including enough information about her for anyone to identify her as the likely culprit--is very disturbing. Unbelievable to me that this got through editors and fact-checking at Wired with no one apparently making any effort to determine if she was readily identifiable. Wired really has to apologize--whether they will, who knows?

 

[bobbler]

Very strong reply by Long Covid Advocacy on BlueSky:

---

Long Covid Advocacy
June 2 2026
OF KEY CONCERNS
We've now read Alan Levinovitz's WIRED piece on Long Covid.
Our concern isn't that it discusses psychological theories.
Our concern is that it repeatedly conflates criticism of evidence with creating a "climate of fear".Those are not the same thing. /1

Six years since the height of the pandemic, the scientific community remains baffled by long Covid.
But there might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.
The Painful Truth About Long Covid
CONFUSING VALIDATION WITH EVIDENCE
The article repeatedly blurs two separate claims:
Patients are genuinely ill and deserve to be believed
A specific treatment is effective.

These are different questions requiring different standards of evidence. /2

Believing patients is not the same thing as endorsing treatment claims.
And demanding evidence for treatment claims is not the same thing as denying illness. Conflating stigma helps no one in the community. /3

ANECDOTES ARE NOT EFFICACY DATA Recovery stories matter.
They generate hypotheses.
But anecdotes are not proof that an intervention works.
That's why medicine uses controls, comparison groups, replication and rigorous trials. /4

The question isn't whether people improved.
The question is whether a specific intervention caused the improvement.
Those are not the same thing.
Science exists precisely to remove the bias of anecdotes.
It isn't based on opinion for GOOD REASON! /5

REWRITING THE HISTORY OF PATIENT SCEPTICISM
AL suggests that resistance to psychogenic or mind-body explanations is driven by fear, stigma, or ideology
But many patients became sceptical because of decades of disputed research, dismissal, psychologisation and poor outcomes /6

Criticism of PACE was not primarily: "We refuse to consider psychology.
"It was:"We dispute the methodology, outcome measures and conclusions.
"That is an evidence debate not an anecdote or fear debate.
Portraying 'both sides" does not justify the stance taken by AL. /7

FRAMING PATIENT ADVOCACY AS A CLIMATE OF FEAR
The article repeatedly suggests that advocates and patient communities have created a climate in which psychological explanations cannot be discussed.
This framing ignores a basic reality. /8

Behavioural and psychosocial models dominated ME research, policy and clinical guidance for decades
Patients were not resisting a marginalised idea
They were challenging an influential one!
Long Covid research has also been dominated by cheap, lifestyle, behavioural methods /9A

major feature in WIRED is not evidence that discussion is impossible.
It is evidence that discussion is happening.
There is no shortage of articles, platforms & opinion about brain training.
The question is whether the arguments withstand scrutiny. /10

There is a certain irony in framing the discussion like the right-wing does for cancel culture on a platform of millions.
This isn't the tofu-eating wokerati this is people desperately ill, who have been harmed and are looking for effective treatment for many. /11

TURNING CRITICISM INTO PROOF
We are seeing a troubling pattern: Criticism of claims about brain retraining is reframed as evidence that people are afraid to discuss brain retraining. /12

But disagreement is not suppression!
Scientific debate requires criticism.
If criticism itself becomes proof of the thesis, the thesis becomes impossible to challenge. Handy! /13

GASLIGHTING IS NOT THE SAME AS SCIENTIFIC DISAGREEMENT
Patients have spent years describing experiences of dismissal, psychologisation, disbelief and institutional harm.
That history should not be repackaged as a fear of discussing psychology. /14

Raising concerns about evidence is not gaslighting.
We are deeply concerned at AL claiming patients are gaslighting other patients if they disagree.
Questioning efficacy claims is not abuse.
Requiring rigorous evidence is not censorship. /15

A FALSE CHOICE
The article creates a false choice: Accept brain retraining as a plausible path forward, or be portrayed as ideological, fearful, or anti-science.
The point is that we need research to determine an effective treatment. /16

If we look at ME there were 100's of behavioural studies for DECADES.
Most of the research was behavioural!
None of it worked.
We saw this in the NICE evidence review.
ALL the evidence was low/very low in quality.
The point is this mistake should not be repeated for Long Covid /17

THE FALSE DUALISM
A major problem in the article is the framing of a false binary: “biological absolutism” versus “psychological explanations.
”This is not the real divide.
Medicine does not operate on a choice between mind and body narratives.
It operates on EVIDENCE ffs. /18

The article finishes using a social services case to support a much broader claim about “climate of fear” shaping science and forcing biological framing.
That’s a major inferential leap & a betrayal of the trauma families have experienced. /19

They shouldn't be used to justify the article's thesis of fear & that advocates are "forced to insist on exclusively biological origin" & that no one will get better if this happens.
It's a low blow.
What we need is funding for effective research for treatments that work /20

There's more but we also note that claims about exercise and CBT are presented with relatively little engagement with the methodological critiques of that evidence base, particularly in relation to outcome measures and post-exertional malaise. ‍/21

Non paywalled article is here. /22

smry.ai
Article from wired.com

In light of this article that is creating more trauma for the community we recommend cultural feminist historian & ally Dr Elinor Cleghorn's words:
Full video: longcovidadvoc.com

---

Is this guy just one of those antagonist types?

I find it hard to believe anyone could conclude the suppression wasn’t coming from the side that primes readers by ad hominem insinuations of whole populations and then refuses to print peer reviews that point out errors.

So it’s a foot on the neck of those with the foot on their neck antagonism to take those having the narrative manipulated and the facts suppressed whilst the truth is falsified just to try and get the wind-up reaction to supposedly demonstrate a fallacy (that writing on social media what bunking research is, just like he probably put in such words about biobabble papers isn’t the thing that is suppression and happens to be the only right of reply to a stream of constant untruths).

Its reads like classic post truth redefining what truth is and what the definition of a term is being sold as a new definition etc usual propaganda style yo me.

I’m just curious if this is this persons usual schtick (kick the dog to make it yap then call it yappy and ‘see that’s what suppression is’) or if it’s someone else’s (that he thinks is eminent but doesn’t know what they can be like) whose word he has taken at face value and swallowed whole something he’d otherwise have seen as distorted?

 

[MrMagoo]

He seems to be a lot of things, none of which I can type out on this forum without breaking the rules.

 

[bobbler]

Humans, in general, are great at describing how they feel, but they're terrible at reliably assigning causation. I see no more reason to give any more credence on that to a believer in Sarno's drivel than to an advocate of homeopathy, crystals, faith healing, reiki, or ceremonies involving tree frogs. Levinovitz could find adherents of all of those, and write similarly about them, but I suspect the average WIRED reader would not take him quite as seriously if he did.

Levinovitz's experts are quite correct: many of the "biomedical" claims that have historically been made about LC & ME/CFS do not stand up to serious scrutiny, as we have discussed at length on S4ME over the years. As anyone with any relevant background can attest - until recent times and with a few particular exceptions - it has been all too often the province of third-raters and marginal academics with niche ideas. What he fails to acknowledge is that the problems associated with psychobehaviouralism are just as severe, if not more so, and unlike the problems with biomedical research they are pervasive and field-wide.

Psychosomatics does not attract serious scientific minds; indeed, it seems to disproportionately attract those who enjoy piling calumnies on patients, speculating adversely about their personalities, attempting to associate them en bloc with criminality, and framing even the most tame of entirely legitimate critiques as abusive. Their actions account in no small part for why patients are so frequently mistreated by the medical profession.

I have little time for the argument that people somehow cannot talk about these modalities. There is oodles of material out there promoting them: advertisements, Facebook groups, sympathetic published articles, monetised YouTube channels & so forth. And, for that matter, lengthy articles in WIRED claiming that they can't talk about them.

So-called "mind-body" interventions are very close indeed to what the NHS's psychobehavioural clinics have done for decades on end, with no results to speak of save for accumulating aggrieved patients. What the psychobehaviouralists object to is that they are no longer able to dominate the debate as they once did; the Internet has democratised it.

As someone who has spent their days & nights for many years in severe pain (not a feature of my life before GET, incidentally); as someone who has lost any serious opportunity to contribute to scientific knowledge or even to society; as someone (to crib a line from the Rubaiyyat) whose leaves of life are falling one by one, I can muster very little sympathy for this indulgence of pseudoscience.

It’s quite surprising, as someone who has a BSc psychology, that particularly for the types of areas targeted by those selling it (either to make money or selling it existing just to make an assertion ad hominem) that anything with that name ‘brain retraining’ has been allowed for ANY illness or condition.

It has such obvious insinuations that it would be used just as a phrase ‘that people like that just need their brain retraining’. Plus of course real psychology used to live knowing about its dark ‘should never return’ shadow of bad 60s experiments that really weren’t about helping anyone’s health or mental health but were about ‘messing with their minds’.

It literally by the name sounds like something invented for those wanting to do propaganda as a get around for insinuating ‘they just don’t think right’ without even needing a nod or a wink. Just a term to get away with the saying one insult they had to pretend they weren’t saying: ‘cos it’s just the name of the therapy’

and the one harmful thing they had to charade their ‘therapy’ wasn’t is now exactly what they are putting on the tin in ‘brain retraining’. It’s exactly re-education and exactly asserting ‘you need your brain retraining mate’. I’m surprised if it isn’t a few snide people’s fave diss to acquaintances in general just like we had some awful ones in the 80s we’d never feel allowed to repeat that are along those lines.

So it feels like a rather unpleasant sign of the times the chain of people involved in signing off people saying it all publicly particularly when it means no friends taking you aside for a quiet word after, and no editor if it’s a published media saying they feel uneasy but being ok with that code allowing it to slip through and meaning they ‘are covered’ as if it’s about someone selling their product.

It’s about as subtle as if they allowed daily articles claiming a certain demographic ‘need this special deodorant’ when they didn’t (and they no proof), calling it ‘people with cfs stink and need better hygiene’ and it being said everywhere and people claiming no harm no foul cos they were just ‘trying to help’ even though it both doesn’t work, and ‘that’s just the name of the product, not my opinion’ - but is also not what is being sold by most writing about it because they are really just selling the IDEA that x people smell.

And I don’t think if their audience hadn’t been softened up by the BS allowed by those who should have preserved their trademark of CBT for real therapy that had an actual model that was intending to be therapeutic (not focused on how they want people to act even if it hurt the patient short and long term), letting cfs-CBT hide itself under that term and being allowed to hide what it was by the chosen ignorance of their intermediaries they recruited to push people to it in choosing to not even look up that cfs-CBT was selling harmful BS into poor patients by a combative approach that’s only t’therapy’ when the model has been about understanding the illness and caring if it helps.

Leaving CBT anywhere near the guidelines only fit the benefit of those who built an undeserved career in it at the detriment of those made pawns (because to get paid they had to force subjects into it and claim there was a problem it fixed). In order they could twist the tiny ‘not THAT BS CBT’ window open to offer more insults via embedding it into the entire offering and propaganda.

Could you imagine how if none of that had happened but they’d just gone straight into:

‘cfs people just need brain retraining’

….would probably be seen for what it is as a phrase even from many in the media. PR of the anti style.

Of course they like to pretend it works in order to allow them to say that derogatory phrase that’s the equivalent of being able to say exactly what they’ve always wanted to say but had to dance around (when people said ‘what’s CBT’ ).

And of course they like the term is a mystery in what ‘brain retraining’ contains so anyone can deliver any old socks because the point is they don’t care , they just think they should fix themselves is the message - and if they don’t, then don’t give em any sympathy because not only do they think wrong but here’s xyz bs to make you think they are the type who don’t try for some reason.

It’s sad when spiel becomes so honed someone doesn’t realise they’ve been conned into calling up someone important (like their boss) and be so bamboozled by the person giving them the sob story they don’t notice they’ve been told to ‘ask for Mr P. Nice and Mr D Head’ but that’s the equitation what writing an article whose main message is that a group of disabled people ‘need brain retraining’ combined with a bunch of ad hominem attacks made based on things that person knows they didn’t do or are perfectly normal critique when it’s him re: biobabble but double standards required for psychbabble

I just find it astounding if he’s been persuaded into this and so primed (with nonsense of ‘what pwme are like’) that instead of looking at what he’s saying from a stand back and read what you’ve said big picture and what his plain words actually say directly he’s been so gee’d up (with ooh they won’t like that) he can’t read responses properly etc and has effectively been told to somehow hear that as suppression whilst being the suppressor etc.

 

[MrMagoo]

Why doesn’t brain retraining work on
-violence
-criminality
-dyslexia
-shyness
-low intelligence
- people who can’t sing
-bad handwriting
-smoking
-period pain
-endometriosis

Why does it only work on ME, LC and medically unexplained pain?

If brain rewiring the neuroplasticity software is so simple surely it should be rolled out everywhere! No that is not an invite…

 

[Chandelier]

Very long thread by Tern on Twitter.
I‘m only providing the beginning:

tern

@1goodtern
10h
Ok.I've read "The Painful Truth About Long Covid" six times through, and I'm ready.Here are ten clues in the article that point to the writer's bad faith.

Before I crack on, two points:First, I'm not going to criticise the science in the article much - some experts are already doing that elsewhere.My area of university study was criticism and analysis of the written word:History, theology, literature.

 

[SNT Gatchaman]

Good responses from Todd, Elke, tern. (Edit: and Manuel).

The Professor of Religion espouses Bad Faith.

 

[Trish]

Commentary on the Long Covid article by Alan Levinovitz in WIRED magazine
By Dr Elke Hausmann
Very good rebuttal of the Wired article published on Substack by Long Covid Advocacy,

A few quotes:

What a headline. Ok, so generally journalists are not responsible for the headlines to their articles. But there are several tropes here, so this is where I’ll start.

‘The Truth’ – remember, this article appeared in a US American magazine. ‘The Truth’ as a concept is BIG in Trump’s America, and it is always a ‘Truth’ withheld from the public by nebulous forces, and only whispered by those in the know, because there are always evil people out to punish those who dare to speak ‘The Truth’. There are definitely some evil people making an appearance in this article. Patients.

‘Finally’ a ‘way forward’?? The brain retraining approaches and ideas around fear and fight and flight that are promoted in this article long predate the pandemic. There is nothing new here.

In the section on exercise and PEM (post-exertional malaise), I am quoted as saying:

we need to use the precautionary principle of “first do no harm” and not offer physical rehabilitation to patients with Long Covid and ME, or only with the greatest caution
which is immediately counterposed with a section where we are told that not exercising in itself can cause harm (no shit, Sherlock). I was actually infuriated by the way this was presented – it shows a complete ignorance of the reality of PEM and even sheds doubt on the existence of PEM. I will explain:

PEM is NOT a ‘false belief’ that exercise will have negative consequences – and those of us with PEM are very aware that deconditioning potentially has further serious consequences for our health, which is already poor.

Indeed, the only ‘false belief’ I constantly come up against is thinking on better days that I can do more again, so I do more, in the expectation that this time I’d get away with it, which can often be sustained for up to a few days because of the delayed nature of PEM that hits when you least expect it (because you DON’T expect it, you expect to be ok, until you are not). I’m constantly testing my boundaries in the hope that they may have shifted, because I want to be able to run, cycle, swim again, and because I am witnessing my muscles softening and I hate it, and I know it’s bad for me being so inactive.

The choice is not between no exercise and getting deconditioned, or exercise and preventing deconditioning; it’s about finding a balance between keeping moving as much as possible without negative consequences so as to keep as conditioned as possible – as more exertion leads to more crashes leads to MORE deconditioning. The harm of promoting exercise consists of risking the illness getting worse AND deconditioning getting worse. Pacing will help with the severity of the illness AND with remaining as conditioned as possible. If you don’t understand that, you have understood nothing about PEM.

I did a quick straw poll among some Long Covid peers whether they could imagine doing HIIT (as suggested in the article) – not surprisingly, the response was somewhere along the lines of WTF.

Anyway, so why am I not recovered? Is it because I have ‘cursed myself’ by believing that my illness is biological and as a consequence there is nothing I can do about it?

Is it because I haven’t done lots of different brain retraining courses (curiously, one of the supporting arguments in this article for brain retraining working appears to be that some people try lots of different programmes which DON’T work, only for one finally to work – really?! Or was it just their body recovering over time, which happened to coincide with yet another attempt at brain retraining?)

Or could it be that it’s simply because I have an illness for which we don’t have a cure yet?

You tell me.

 

[Learningandlistening]

None.

Author of the article (Alan Levinovitz) here. First, I appreciate the discussion of the piece, even if you think it is egregiously misguided and harmful. Science4Me is a good place. I am not going to get into defending the piece, or engaging with the many critiques brought up here, and elsewhere. Instead, I'll make my case in a slightly different way.

Let's take two different diagnoses: hEDS and MCAS. My position is that if Jonathan Edwards were to write a longform piece making the case for his positions on hEDS ("a re-descriptiion of some people being a bit bendy") and MCAS — basically a garbage diagnosis that can be traced to one person — he would become persona non grata. He would receive endless threats. Social media would come for him with a vengeance. People would cite all the experts and say "how dare he". They would react to him exactly as they are reacting to me.

That's because the socio-cultural context in which hEDS and MCAS currently exist — which is a huge overlapping Venn diagram with the advocacy and activism communities for ME/CFS and LC — makes it impossible to discuss the science around them. People may believe, as Edwards does, that ME/CFS and LC are obviously different from hEDS and MCAS, in terms of how they became common diagnoses, or their clinical utility. They may believe that I deserve the reaction, and he wouldn't.

But it doesn't really matter for my argument. My arguments is that discussing any of these conditions in the way they ought to be discussed, and studied the way they ought to be studied, is not possible right now. And if you want to see how that's true, honestly the best way would be for Edwards to write exactly that piece: An op-ed in a major publication, as an expert and someone in the ME/CFS community, about how he believes hEDS and MCAS are lousy, scientifically dubious diagnoses, and should be bracketed so that the study of more useful diagnoses, like ME/CFS, isn't compromised by association. And then see what happens.

 

[Trish]

Author of the article (Alan Levinovitz) here. First, I appreciate the discussion of the piece, even if you think it is egregiously misguided and harmful. Science4Me is a good place. I am not going to get into defending the piece, or engaging with the many critiques brought up here, and elsewhere. Instead, I'll make my case in a slightly different way.

Welcome, and thank you for joining us.

I hope you will read the article by Elke Hausmann I posted above.

I hope you will also read our fact sheets on ME/CFS and stick around on the forum to learn more about why many of us find much of your article so wrong.

My arguments is that discussing any of these conditions in the way they ought to be discussed, and studied the way they ought to be studied, is not possible right now.

It depends where you want to go to discuss them. If you inhabit Twitter, you can expect anything you choose to discuss to be met with hostility, because that's the current nature of Twitter.

 

[MrMagoo]

Author of the article (Alan Levinovitz) here. First, I appreciate the discussion of the piece, even if you think it is egregiously misguided and harmful. Science4Me is a good place. I am not going to get into defending the piece, or engaging with the many critiques brought up here, and elsewhere. Instead, I'll make my case in a slightly different way.

Let's take two different diagnoses: hEDS and MCAS. My position is that if Jonathan Edwards were to write a longform piece making the case for his positions on hEDS ("a re-descriptiion of some people being a bit bendy") and MCAS — basically a garbage diagnosis that can be traced to one person — he would become persona non grata. He would receive endless threats. Social media would come for him with a vengeance. People would cite all the experts and say "how dare he". They would react to him exactly as they are reacting to me.

That's because the socio-cultural context in which hEDS and MCAS currently exist — which is a huge overlapping Venn diagram with the advocacy and activism communities for ME/CFS and LC — makes it impossible to discuss the science around them. People may believe, as Edwards does, that ME/CFS and LC are obviously different from hEDS and MCAS, in terms of how they became common diagnoses, or their clinical utility. They may believe that I deserve the reaction, and he wouldn't.

But it doesn't really matter for my argument. My arguments is that discussing any of these conditions in the way they ought to be discussed, and studied the way they ought to be studied, is not possible right now. And if you want to see how that's true, honestly the best way would be for Edwards to write exactly that piece: An op-ed in a major publication, as an expert and someone in the ME/CFS community, about how he believes hEDS and MCAS are lousy, scientifically dubious diagnoses, and should be bracketed so that the study of more useful diagnoses, like ME/CFS, isn't compromised by association. And then see what happens.

View attachment 32691

That’s all a bit of a straw man. I prefer to stay on topic, that being your article. I don’t want a thought experiment regarding different conditions and the opinion of one poster on a science forum. Although that’s a good distraction from the items you state you won’t discuss (extensive queries and criticisms of your article, the point of this thread and the one area you would have a contribution to make to the thread).


If you can’t make a point succinctly without writing several paragraphs then I find it unconvincing, sorry. What was the point you’re trying to make?
These problems are studied and discussed, I mean look at this website!

 

[MrMagoo]

Welcome, and thank you for joining us.

I hope you will read the article by Elke Hausmann I posted above.

I hope you will also read our fact sheets on ME/CFS and stick around on the forum to learn more about why many of us find much of your article so wrong.


It depends where you want to go to discuss them. If you inhabit Twitter, you can expect anything you choose to discuss to be met with hostility, because that's the current nature of Twitter.

Comes *here to the discussion where we are discussing them, to discuss how they can’t be discussed?

ETA spelling

 

[bobbler]

Author of the article (Alan Levinovitz) here. First, I appreciate the discussion of the piece, even if you think it is egregiously misguided and harmful. Science4Me is a good place. I am not going to get into defending the piece, or engaging with the many critiques brought up here, and elsewhere. Instead, I'll make my case in a slightly different way.

Let's take two different diagnoses: hEDS and MCAS. My position is that if Jonathan Edwards were to write a longform piece making the case for his positions on hEDS ("a re-descriptiion of some people being a bit bendy") and MCAS — basically a garbage diagnosis that can be traced to one person — he would become persona non grata. He would receive endless threats. Social media would come for him with a vengeance. People would cite all the experts and say "how dare he". They would react to him exactly as they are reacting to me.

That's because the socio-cultural context in which hEDS and MCAS currently exist — which is a huge overlapping Venn diagram with the advocacy and activism communities for ME/CFS and LC — makes it impossible to discuss the science around them. People may believe, as Edwards does, that ME/CFS and LC are obviously different from hEDS and MCAS, in terms of how they became common diagnoses, or their clinical utility. They may believe that I deserve the reaction, and he wouldn't.

But it doesn't really matter for my argument. My arguments is that discussing any of these conditions in the way they ought to be discussed, and studied the way they ought to be studied, is not possible right now. And if you want to see how that's true, honestly the best way would be for Edwards to write exactly that piece: An op-ed in a major publication, as an expert and someone in the ME/CFS community, about how he believes hEDS and MCAS are lousy, scientifically dubious diagnoses, and should be bracketed so that the study of more useful diagnoses, like ME/CFS, isn't compromised by association. And then see what happens.

View attachment 32691

do you have any comments on the science or the detail or method of any of these things ?

All I read seems to be stuff suggesting things about other people that they’ve not done or thought yet or you’ve extrapolated ‘because they said the science was wrong’.

Isn’t the norm for someone to reply about why something has been methodologically robust or not in its research design rather than these distractions - if that was what any of the article was either about or for?

 

[Utsikt]

Science4Me is a good place. I am not going to get into defending the piece, or engaging with the many critiques brought up here, and elsewhere.

Why not?

Instead, I'll make my case in a slightly different way.

What are you trying to make a case for? I don’t understand what point you’re trying to make.

Are you saying you don’t want to discuss the article with some people that want to discuss it, because other people have behaved badly?

Or are you saying that you do not care about the criticism because no matter what you say on the internet you’ll get a lot of criticism, so there’s no reason to engage with any of it?

 

[Jonathan Edwards]

My arguments is that discussing any of these conditions in the way they ought to be discussed, and studied the way they ought to be studied, is not possible right now.

That is a strange thing to say while discussing these things.
It is perfectly possible to discuss them - as they ought to be discussed, in a forum open to everyone, not some pseudoauthoritative journal. Science does not move forward by writing articles in prestigious rags. I have always said that grants and publications are the consolation prizes of being a second rate scientist. Science moves forward by people working out answers to scientific questions and putting the results into practice and enjoying the satisfaction of having solved a problem.

The difference between what I have been proposing and what you have proposed is that what I have proposed is based on the reliability of the available evidence. Your suggestions appear to be based on claims where there is no reliable evidence at all. Why get involved in an argument about things you only have hearsay knowledge of? Generating hot air does not bring consolation in old age.

 

[Learningandlistening]

Welcome, and thank you for joining us.

I hope you will read the article by Elke Hausmann I posted above.

I hope you will also read our fact sheets on ME/CFS and stick around on the forum to learn more about why many of us find much of your article so wrong.


It depends where you want to go to discuss them. If you inhabit Twitter, you can expect anything you choose to discuss to be met with hostility, because that's the current nature of Twitter.

That’s all a bit of a straw man. I prefer to stay on topic, that being your article. I don’t want a thought experiment regarding different conditions and the opinion of one poster on a science forum. Although that’s a good distraction from the items you state you won’t discuss (extensive queries and criticisms of your article, the point of this thread and the one area you would have a contribution to make to the thread).


If you can’t make a point succinctly without writing several paragraphs then I find it unconvincing, sorry. What was the point you’re trying to make?
These problems are studied and discussed, I mean look at this website!

If I can't make a point without writing several paragraphs then you find it unconvincing? Unfortunately some points take longer than a bumper sticker to make! I'll do my best to be as succinct as possible.

My point is that the broader community that both has and advocates for these often overlapping diagnoses has created socio-cultural conditions that make it very hard for clinicians, scientists, and the general public to engage in dispassionate, objective research or discussion. I bring up the other conditions because my argument in the WIRED piece is about a broader socio-cultural context, where validating diagnoses is of paramount importance, and criticizing them (or patients' experiences of them) is broadly taboo.

 

[Jonathan Edwards]

My position is that if Jonathan Edwards were to write a longform piece making the case for his positions on hEDS ("a re-descriptiion of some people being a bit bendy") and MCAS — basically a garbage diagnosis that can be traced to one person — he would become persona non grata.

Actually, this suggests a complete lack of knowledge of the medical position on this. My views on hEDS and MCAS are very mainstream medicine. I suspect the main reason why they do not get said in reviews very often is that those of us in the majority as physicians who see these as nonsense categories cannot be bothered with pointing out the problems. For most physicians it is (a) too dull and (b) a fringe are one does not want to be associated with.


I am already persona non grata with the fringe physicians. Nothing would change.

 

[Learningandlistening]

That is a strange thing to say while discussing these things.
It is perfectly possible to discuss them - as they ought to be discussed, in a forum open to everyone, not some pseudoauthoritative journal. Science does not move forward by writing articles in prestigious rags. I have always said that grants and publications are the consolation prizes of being a second rate scientist. Science moves forward by people working out answers to scientific questions and putting the results into practice and enjoying the satisfaction of having solved a problem.

The difference between what I have been proposing and what you have proposed is that what I have proposed is based on the reliability of the available evidence. Your suggestions appear to be based on claims where there is no reliable evidence at all. Why get involved in an argument about things you only have hearsay knowledge of? Generating hot air does not bring consolation in old age.

You're not addressing my point. My point is about the socio-cultural context that directs scientific research and funding. It also directs how clinicians issue diagnoses. Scientists are extremely motivated to NOT study whether hEDS is "being a bit bendy." The socio-cultural context creates financial and moral incentives for producing validation of the diagnosis.

The same is true of what's happening with the (very bad) science on exercise, long Covid, and self-report of PEM. Studies with no convalescent control groups, moving goal posts on what 2 day CPET tests show us, on and on. It is also true of the (very bad) genetics science going on with long Covid. Likewise for neuroimmunology. The scientific world is not some separate institution. Funding, motivation, etc. are all affected by the complicated broader climate.

During the year I spent researching these topics, I brought all of the studies of long Covid to leading experts in the subfield, but who were themselves outside the LC world. Here, for example, is the response from a leading statistical geneticist, whose subfield is in the same area as many of the LC studies. It's long but worth reading. I did the same with every single other subfield:

The Lammi et al. abstract you sent (https://academic.oup.com/sleep/article/48/Supplement_1/A32/8135561) is the closest to my expertise and in my opinion the strongest genetic evidence. This study was formally published in Nature Genetics (https://www.nature.com/articles/s41588-025-02100-w) which is one of the highest tier journals in genetics and looks very rigorous, including robust independent replication. What they find is pretty interesting: they identify a single gene/locus associated with long COVID and the same genetic variant was previously associated with COVID severity. Surprisingly (to me at least) they also see the highest genetic correlation between long COVID and depression, insomnia, and risk taking. I’m speculating, but this would be consistent with long COVID being a phenomenon of (1) more severe COVID + (2) psychological/behavioral factors.

A separate study (https://www.medrxiv.org/content/10.1101/2024.10.07.24315052v1), which has not been published yet but is from a strong team including 23andme, identified a different set of associations and was not able to replicate the findings from the above paper. However, they also observed very significant genetic correlations with chronic pain, anxiety, depression. So I think the behavioral component is now quite well established whereas the locus mechanisms vary from study to study (which could be genuine biological or diagnostic variation, since these studies are high quality).

These studies are still very early, but I would say that the overall results are currently underwhelming and don't provide strong evidence for long COVID being a distinct biological condition. At this sample size we should expect associations with essentially any phenotype you could think of, but the relatively small number of findings and the lack of replication across studies suggests this is a very heterogenous outcome if it is a distinct outcome at all.

With respect to the other studies you cited, I think that Hansen et al. (https://onlinelibrary.wiley.com/doi/full/10.1002/jmv.70275) is basically junk, with a tiny sample size, no replication, and no rigor in the statistical analysis. Likewise, Taylor et al (https://link.springer.com/article/10.1186/s12967-023-04588-4) is also low quality, they are using a very non-standard combinatorial framework to find combinations of genetic variants, which are almost never observed and require substantially larger sample sizes (hundreds of thousands) to investigate. Menezes et al. (https://www.medrxiv.org/content/10.1101/2024.01.14.24301293v1.full) is outside my area but by focusing on the transcriptome instead of the genome they lose the causal nature of a genetic instrument and so the results are very hard to interpret; they could be picking up actual causal COVID biology or they could be picking up the fact that long COVID patients are less likely to smoke or more likely to be on some medication ( transcriptomic/epigenomic signatures picking up the downstream effects of medication/behavior rather than the upstream effects of the disease has been a major problem for psychiatric biomarkers in the past). Taken together, I think these studies are still all very speculative and not well conducted and I would take their results with a lot of skepticism. My sense is that people are trying to mine data that they have sitting around that is not actually well designed for this question.

My point here is not to get into the weeds on the genetics of LC. My point is that scientific inquiry is driven by socio-cultural factors. Certain types of inquiry get funded, others do not. Some meet with approval from advocacy groups, others do not. And in the case of long Covid, as in hEDS and MCAS, the broader context in which scientific inquiry is taking place does not conduce to good science. Not on hEDS, and not on exercise and PEM in LC.

That is the subject of my WIRED piece.

 

[Utsikt]

My point is that the broader community that both has and advocates for these often overlapping diagnoses has created socio-cultural conditions that make it very hard for clinicians, scientists, and the general public to engage in dispassionate, objective research or discussion.

Says you on the forum that tries to engage in discussions about research, while refusing to engage in the discussion.

I bring up the other conditions because my argument in the WIRED piece is about a broader socio-cultural context, where validating diagnoses is of paramount importance, and criticizing them (or patients' experiences of them) is broadly taboo.

No, the piece is about mind-body woo, which gets a lot of backlash because it’s complete nonsense that’s being used to abuse patients, among other things. But you don’t want to discuss the merits of the thing that is getting pushback.

 

[Hoopoe]

That's because the socio-cultural context in which hEDS and MCAS currently exist — which is a huge overlapping Venn diagram with the advocacy and activism communities for ME/CFS and LC — makes it impossible to discuss the science around them.

Patients are driven to these diagnoses because of medical neglect, psychologization and not being taken seriously. The system is failing them so they search for alternatives.

Mainstream medicine would ignore them, or say they're mentally ill and refusing to accept that out of stigma against mental illness, or that they're worried but well, or that their symptoms are imaginary and things like that. That's precisely the abdication of responsibility that's driving patients away. You're engaging in the same behaviour by trying to persuade readers that brain retraining may be the answer (which, ironically, is also nothing but a dubious fad like hEDS and MCAS).

It's not clear what these patients have or how to help them. A portion probably have ME/CFS. We would need good research.

There are a few doctors who are probably well-meaning and try to help, and some who are cynically exploiting patients. hEDS and MCAS seem to be among the diagnoses that have the necessary characteristics to proliferate, at least for a while. Society expects a person to have a diagnosis and the expectation is that there is no diagnostic uncertainty and no disease that is real and disabling while simultaneously being undiagnosiable.

Yes, patients do form groups and identities that includes diagnoses of hEDS and MCAS, and do feel attacked when these diagnoses are questioned, but I don't think this is unique to marginalized or dubious diagnoses. It's just that it doesn't seem to bother anyone when it's diagnoses that they consider credible. You would not get kind responses if you wrote similarly about other diseases.

Historically, there have been many confused and weird ideas about illnesses that were not understood at the time. Often the explanations involved alleged psychosomatic factors and personality as cause of the illness. What's going on in the ME/CFS, LC, hEDS, MCAS, POTS spaces doesn't really seem new. Maybe some are bothered by the fact that patients are able to form online communities and talk about these things.

The difference between psychosomatic diagnoses and things like hEDS/MCAS is that psychosomatic diagnoses are convenient for physicians and the social security system. The psychosomatic diagnosis implicitly shifts the responsibility for getting better onto the patient and turns getting better into a test of character.

What is driving all these dynamics is the suffering caused by the illness. It won't go away until there are real solutions.