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

[Trish]

This might be the most important point of all, both in the article, and in general when it comes to what I care about. How can we sort out these subsets? And why is it that no one thinks, or wants to think, that they are in the subset that might be amenable to a "ritual" intervention? Is it because they tried it once, or twice, or ten times, and it failed? That, it seems to me, is bad logic.

No, it's because we haven't seen any well conducted clinical trial evidence that any 'ritual' intervention works for anybody, and I have read seriously disturbing examples of people being psychologically damaged and/or their ME/CFS made severely much worse from psychobehavioural interventions. The same applies for people with Long Covid who have PEM.

I would love there to be a simple behavioural or thinking change that would cure me. That sounds much more manageable than having to travel to hospital, probably miles away from the rural small town I live in, to have repeated infusions of some powerful drug with nasty sounding side effects.

 

[Trish]

I don't really know why I'm wasting so much time on this one article. I guess it's because it's so frustrating and upsetting to see yet again the old tropes about us shutting down research, or attacking people, alongside unfounded claims about treatment efficacy.

And to hear there's an upcoming book too. We've seen Susanne O'Sullivan and Fiona Fox's books winning prizes and getting wide praise, and I fear this one will too, to the detriment of people with Long Covid and ME/CFS.

As I said in an earlier post, I understand the book this is part of is forthcoming. I hope somehow, Alan Levinovitz will see that he perhaps hasn't understood the full situation, and is risking people's health while no doubt making money and enjoying the extra sales that will be generated by a public backlash. Sigh. It's the same old story. We have no power.

I hope sense will prevail and the book withdrawn before publication.

 

[Sly Saint]

I don't really know why I'm wasting so much time on this one article. I guess it's because it's so frustrating and upsetting to see yet again the old tropes about us shutting down research, or attacking people, alongside unfounded claims about treatment efficacy.

And to hear there's an upcoming book too. We've seen Susanne O'Sullivan and Fiona Fox's books winning prizes and getting wide praise, and I fear this one will too, to the detriment of people with Long Covid and ME/CFS.

As I said in an earlier post, I understand the book this is part of is forthcoming. I hope somehow, Alan Levinovitz will see that he perhaps hasn't understood the full situation, and is risking people's health while no doubt making money and enjoying the extra sales that will be generated by a public backlash. Sigh. It's the same old story. We have no power.

I hope sense will prevail and the book withdrawn before publication.

look on the bright side......... at least he won't get a knighthood.
(just occurred to me maybe that's what Garner is after(?), I'm pretty sure Michael Sharpe is).

 

[PageofME]

I think @Learningandlistening is right in some basic sense here. I think that it is a valid endeavour to try to distinguish people with a psychogenic condition from those with an underlying pathophysiology.

I think ME/CFS advocates have often been dismissive of this because for decades BPS proponents have tried to psychologize the whole condition. I lay the blame mainly with them.

I think BPS proponents should acknowledge that there are with high certainty a large number of people with a underlying pathophysiology. But I also think ME/CFS advocates should acknowledge that there might be a few people who match the BPS view of the condition: Anxiety, avoidance, burnout, depression, hypochondria. I think acknowledging this would be beneficial for ME/CFS advocacy.

I have not met any people with such a psychogenic condition myself, so maybe I am all wrong. I would call them "misdiagnosed" instead of a "subset of ME/CFS". It is often said that there is a large number of people with misdiagnosed ME/CFS. But I suspect that they are far fewer than Alan and other BPS proponents may think. I just have the feeling that when people feel really bad they can get confused feelings about their health. Maybe some of those people can be helped by cognitive-behavioural techniques. I have the feeling that one reason to why the BPS perspective has managed to become so widespread is that there really are a some such people, and researchers and physicians confuse ME/CFS with underlying pathophysiology with these people.

I think if psychologists and physicians would make a genuine effort and stop to consider every unknown condition to be psychogenic it would not be so hard so sort out the people who might benefit from cognitive-behavioural techniques.

I agree with many things you're saying because I have met quite a lot of people in in person ME/CFS support groups who had no idea what PEM or Pacing were becaue they had neither experience with the symptom nor the required energy managemant response. However, people with chronic depression and similar unclear psychiatric conditions diagnosed with CFS is a direct result not of the pushback of patients against BPS models but of the psychiatrization of the condition via the CFS reinvention in the US in the late 1980ies.

 

[Mij]

I agree with many things you're saying because I have met quite a lot of people in in person ME/CFS support groups who had no idea what PEM or Pacing were becaue they had neither experience with the symptom nor the required energy managemant response.

In the mid/late 90s I met groups of people in a support group that never mentioned PEM, PEM wasn't a term used back then, but not one person mentioned delayed PEM, or the sickness symptoms I experienced after exertion. I thought I had an entirely different illness, and assumed it would resolve on it's own, only to discover that it made my stamina/energy worse over time, including depleting my cognitive energy.

My ME specialist didn't mention this abnormal reaction to exercise, his advice was to 'do nothing', rest and rest some more. He had over 20yrs experience seeing pwME.

I only started hearing about brain retraining when I got online in the late 90s from patients in the UK. Such a bizarre thing, a 'treatment' that continues to recycle itself every 4-5 years by doctors who think they've discovered something new, like all the other 'treatments', persistent viruses, hypercoagulation, micro clots et. I did the hypercoagulation tests, and the head hematologist and virologist in my city told my doctor it was nonsense. They are NOT online promoting anything or writing books, articles . . . they are interested in real science, biomarkers.

Al, if you're reading this, save your energy, brain retraining doesn't work for pwME, never has and never will.

 

[rvallee]

The objection to my objection might be that pain is subjective, so it has to be measured subjectively.

It’s true that pain is an experience, and that experiences are subjective, but it is not true that the measurements used in the trial automatically are perfectly correlated with the experience of pain by the neurons. They are attempts at proxies for pain.

Subjective experience is not detached from objective reality, though. This is the problem with esoteric dualistic healing magic, it separates subjective experience as an ethereal phenomenon detached from reality itself, capable of producing the exact same experience without the experience.

Which is absurd. Hearing music in one's head, from memory, or even creatively, without hearing it with our ears doesn't mean that hearing does not require sound, it just means that there is an experience we can manifest in our brains that resembles it, but is clearly not the same. Some people can see things very clearly with their minds. Some can very clearly hear and create complex music in their minds. All of which is rooted in how individual brains work, not something working out in other ethereal dimension.

Color is an entirely subjective experience, but it cannot be separated from the fact that it's a subjective interpretation of different frequencies of light and the interaction of the frequencies of waves of photons. It is based on the physical universe, and works entirely through physical and photochemical processes first, then through biological ones, which are also physical and chemical at their core.

Pain might be as impossible to measure as redness is in the human brain, but that doesn't make it a strictly, or even mostly, subjective thing. It has to be interpreted, just as sound has to be interpreted, but it has physical and biological aspects to it, from its origin all the way to its final interpretation. The main mistake medicine is making over this is taking things that are impossible to measure and making narratives out of it.

But that's just with current technology. It might be possible to measure, quantitatively, what redness is to a human brain. Same with pain and other phenomena. The history of science is one painful lesson about how things being impossible to figure out today might become trivial with technology. The idea that we won't find the pathophysiology of ME/CFS is frankly absurd to me. Of course it will be figured out, and only with science. Not with narratives, or beliefs, or teaching people how to interpret things differently. Those are children's stories, Santa Claus for adults.

 

[rvallee]

We have learned to be sceptical, because these apparently promising behavioural approaches have turned out to be disappointing. We have learned that as they are currently done, trials of these non-pharma approaches do not yield the readily interpretable results of placebo-controlled trials of cancer drugs. In those trials, we can objectively verify whether the cancer has shrunk, rather than asking cancer patients if they feel less cancery, or if they are experiencing fewer symptoms.

And taking from that example, I have zero doubt that a cancer study treating it with a strictly psychobehavioral intervention that coaches participants into thinking and reporting themselves as being "less cancery" would achieve that. It wouldn't even be hard. As long as no other tests are done, there will appear to be sub-groups where the intervention "works". Short term, obviously. Those sub-groups would no doubt be those whose cancer is less malignant at the time. Long-term follow-up would find the same thing we find with everything psychobehavioral: return to the mean.

Also something I was thinking yesterday on this issue of finding subsets of people who could be identified to benefit from psychobehavioral interventions: it has never happened once. We have been discussing hundreds of trials and hundreds of studies for many years on this forum, easily over a thousand, many of them seeking to achieve this: finding this subset of a set of people who can be identified to have "biopsychosocial" traits that can be treated with therapy. There are easily hundreds of papers making this promise/boast about finding the subsets, usually calling for more research to find them.

Hasn't happened once. Not a single one such subset has ever been found. Not "none in ME/CFS", or even vaguely with fatigue. None at all. Zero. Zilch. This is why the current approach is the fully generic "everyone should try all of them forever, we'll know that if it worked if it worked". Which is a methodology that would find that putting potatoes in one's socks at night when they have the flu could conclude that doing so cures most flues, or that at least there is a huge subset of people who appear to benefit from potatoes-in-socks therapy as a treatment for the flu.

It's also exactly as useful as tomato-sorting machines that doesn't reject any tomatoes. From the perspective of someone selling the machine, they can boast that not a single good, red tomato will be thrown out, because none will be thrown out. From the perspective of someone who wants to sell those tomatoes, the machine is as entirely worthless as it is to someone who wants to buy an edible tomato.

Which is silly, but this is what they call evidence-based medicine. The evidence is entirely irrelevant, and everything depends on the people involved. Change the people, and you can completely change the outcome from one extreme to its opposite, and participants should believe in the treatments in order for them to work. All of which doesn't just raise all the red flags of pseudoscience, but raises an entire new superset of giant red flags made out entirely out of smaller red flags.

 

[JellyBabyKid]

There's also a much larger number of people who kick their addictions through nothing more than the "magic" of joining a community and engaging in dialogue

12 step programmes actually involve significant amounts of work to change lifestyle, thinking patterns, provide new tools, coping strategies and problem solving skills, as well as mutual support though community. They also provide direction and purpose in life, not just dialogue and community. Most members don't consider themselves "recovered" and practice significant daily maintenance.

pain is an experience, and that experiences are subjective

I have had experience with significant pain, most severely post operatively, and have found that 9/10 pain can be quantified as "cannot function, this needs prescription level pain relief", so can calibrate my daily pain as 2/10 all the time and on average 4/10 on flare up days. Not scientific, but calibrated enough to be sensibly communicated.

Especially as I can also explain the exact circumstances that caused the 9/10 pain (eg major lung surgery, significant wound debridement) which gives a good reference point, especially versus the sting of ear piercing or a tattoo.

I am aware that this doesn't translate for everyone and isn't a standard scale, but it is fairly detailed and descriptive and useful for pain management.

Especially as I once had a nurse tell me that 10 out of 10 pain was giving birth and anything less that that was minor pain.

 

[JellyBabyKid]

I don't really know why I'm wasting so much time on this one article

I have asked myself the same thing, but have found it an extremely rich discussion on a number of issues around mind-body research that we don't always discuss.

I am comforted to know that other members of this forum have tried and still use some practices in a supportive way (I was offered a mind-body programme via the pain clinic, and have meditated for 15 years. Continuing to struggle with deteriorating health, unfortunately)

I am also interested to see that PG has been posting "it's a belief" under broken battery's FB posts about PEM, and that after reading SW's interview here from a 2007 New Scientist he said ME was "beliefs". I fail to understand how the reality I live with on a daily basis can be so completely misunderstood; there is no system in my body that works properly. How can anyone understand that as "a belief"? I had no idea that I had ME for the first six years and kept asking my doctor why my stamina was not returning post operatively, despite trying to increase my exercise, and the consultant at the time telling me that I would make a full recovery and not notice my reduction in lung capacity.

These are two completely different realities between "I can manage my PTSD better and gradually increase my activity and I will get well" and the reality I actually live in, where every time I try any increase in daily activity I get slammed back very hard by overwhelming symptoms that stop me from functioning.

 

[Turtle]

I have asked myself the same thing, but have found it an extremely rich discussion on a number of issues around mind-body research that we don't always discuss.

I am comforted to know that other members of this forum have tried and still use some practices in a supportive way (I was offered a mind-body programme via the pain clinic, and have meditated for 15 years. Continuing to struggle with deteriorating health, unfortunately)

I am also interested to see that PG has been posting "it's a belief" under broken battery's FB posts about PEM, and that after reading SW's interview here from a 2007 New Scientist he said ME was "beliefs". I fail to understand how the reality I live with on a daily basis can be so completely misunderstood; there is no system in my body that works properly. How can anyone understand that as "a belief"? I had no idea that I had ME for the first six years and kept asking my doctor why my stamina was not returning post operatively, despite trying to increase my exercise, and the consultant at the time telling me that I would make a full recovery and not notice my reduction in lung capacity.

These are two completely different realities between "I can manage my PTSD better and gradually increase my activity and I will get well" and the reality I actually live in, where every time I try any increase in daily activity I get slammed back very hard by overwhelming symptoms that stop me from functioning.

The beliefs of PG and SW are only in their minds, my illness in a reality in my body.
Telling me I've been able to fool myself for 35 years is extremely cruel.
Sifting out the people who have psychological problems with costly brain training should not be an option.

Acting as a toddler; putting their hands in front of their eyes, thinking nobody can see them.
All symptoms are gone besause the brain trainers say so, because their belief is: we can fix everything because LC and ME/CFS don't exist.
I don't have the luxury to choose if ME/CFS exists or not, my body reminds me every day.
Participants have to be in for it and aftersales is tested immediately after the training, when still under the influence of the trainers.
Wait for 6 months and then ask if the ïmprovement lasted, at home.

 

[Utsikt]

Subjective experience is not detached from objective reality, though. This is the problem with esoteric dualistic healing magic, it separates subjective experience as an ethereal phenomenon detached from reality itself, capable of producing the exact same experience without the experience.

I don’t think I argued that it is. I said that experience happens in neurons, and that the experience of pain is many steps removed from anything we say or do, so you can manipulate those steps to change the outcome without changing the pain.

 

[JellyBabyKid]

I don't have the luxury to choose if ME/CFS exists or not, my body reminds me every day.

Yes. Painfully and loudly.

 

[forestglip]

So with the logic of your parallels, people who say brain retraining (parallels dieting, AA) have cured themselves. But dieting and AA are not cures. The underlying biologically driven hunger or addiction doesn't go away.

Also, in the case of dieting, trying to will yourself to eat less is extremely difficult and usually ineffective. For the past few centuries of modern medicine, the medications that target GLP-1 did not exist. And now they do. And they're far more successful than willpower for eating less.

Maybe that's a nice little analogy to think about where we should put our research dollars and attention: continuing the research into how to think in some super specific way to get some meager effects that might just be based on torturing statistical data, or research into creating an actually effective medication.

 

[Sean]

Correlation is obviously not causation,

If it is good enough for the brain retrainers to base their claims on, then it is good enough for their critics to base their critiques on.

(It isn't good enough for either, of course.)

 

[forestglip]

One of the main premises of the article is that researchers studying this are not free to do so easily.

It’s the job of the scientific community to solve mysteries like this one. Doing that job effectively, however, has two basic conditions: Researchers must know what they are studying, and they must be free to study it impartially.

@Learningandlistening it doesn't seem like you sufficiently considered whether the pushback on that research is justified. Not every research avenue is worth exploring.

For example, it'd be problematic to make an article saying that researchers aren't free to study how to implement conversion therapy most effectively. Well, it's harmful, so they should be limited in their research. Or if an article said researchers have trouble getting grants to test if a breathing technique can shrink a brain tumor. It'd probably be a total waste of money, so it's good that they would be limited in their funding.

How many people who praised brain retraining did you speak to? And how many who it didn't help, or made worse did you speak to? It's surely relevant for an article examining whether research is unjustifiably hampered to allow at least equal room for stories from the people who have been harmed by the research.

Did you consider the statistics? If the global prevalence of ME/CFS is around 45 million (~0.5%), and natural recovery is a thing that happens, how many natural recoveries would perfectly line up with the use of an intervention? It'd be even less surprising if it was not even the first attempt at the intervention, but the second or third, as for multiple anecdotes in your article. In how many of the recovery anecdotes might causality be reversed, where people pursued brain retraining because of subtle initial natural improvement giving them more ability to do so.

Without including those stories and considerations, the article becomes less like an exploration of a topic and more like marketing for the topic.

Edit: a few minor changes.

 

[MrMagoo]

Did brain training originate from MLMs or is it just a close relative of mindset training?

 

[Utsikt]

ScoutB linked one of the blogs from this page in another thread, and I fell down the rabbit hole. If anyone want to know about why it’s difficult to trust the results of even meta analyses, this blog is worth a read:

The Control Group Is Out Of Control

I. Allan Crossman calls parapsychology the control group for science. That is, in let’s say a drug testing experiment, you give some people the drug and they recover. That doesn’t tell …

slatestarcodex.com

The TL;DR is that it’s almost impossible to remove all confounders so you are very likely to end up with signals that are just noise.

It ends with this amusing demonstration of how we still have to rely on subjective judgements about what’s good and bad practice:

How do I know it’s crap? Well, I use my personal judgment. How do I know my personal judgment is right? Well, a smart well-credentialed person like James Coyne agrees with me. How do I know James Coyne is smart? I can think of lots of cases where he’s been right before. How do I know those count? Well, John Ioannides has published a lot of studies analyzing the problems with science, and confirmed that cases like the ones Coyne talks about are pretty common. Why can I believe Ioannides’ studies? Well, there have been good meta-analyses of them. But how do I know if those meta-analyses are crap or not? Well…

Further down the rabbit hole there is this page by someone else:

What we currently call "science" isn't the best method for uncovering nature's secrets; it's just the first set of methods we've collected that wasn't totally useless like personal anecdote and authority generally are.

The problem brain-retraining and AL is facing, is that they are unwilling to accept that the methods they use have been demonstrated as useless elsewhere, but they keep calling it «science» instead of moving on and trying to do better.

This of course applies to many other fields, and we’re all guilty of it from time to time. The best we can do is discussions like these where we allow others to poke holes at our own beliefs and then try to learn something together.

 

[neurophusion]

Adding to the subject of how the patient community generally responds to better evidence:

Back in the early 2010s, when the reported association between ME/CFS and XMRV was the subject of heated debate over the evidence, and the patient community were being stereotyped as ideologically clinging to XMRV as the answer, there was a definitive study designed by Professor Ian Lipkin to settle this controversy.

When the results came back negative, almost the entire community accepted it and moved on. I remember how quickly it all just dropped away after dominating discussions for 2 years. This acceptance did not happen overnight for everyone, but there was no significantly sized army who still refused to accept the results and demanded anti-retrovirals.

There were already doubts, but the Lipkin study was the final nail in the coffin for XMRV, which turned out to be a laboratory contaminant.

Surely if sufficiently large and rigorous studies were conducted on microclotting and viral persistance in long COVID, and the results were negative, it would give the long COVID community a good reason to drop the issue?

 

[neurophusion]

The claims about proponents of mindbody techniques being suppressed or silenced into the underground reminds me of the following excerpts from a blogpost by Professor Brian Hughes in relation to similar allegations made during the CBT/GET controversy:

... they allege that they themselves are being 'silenced', all while occupying positions of extreme privilege and having their every thought broadcast to the world. Many of them work with professional press officers, and enjoy frequent access to the mass audiences of major news media. These folk who claim to be 'silenced' are often among the most omnipresent and over-powering voices in the public square.

The implication is that ME/CFS patients (and their advocates) who deign to object to medically obsolete treatments are, in fact, sinister malefactors aiming to overthrow the healthcare system by incrementally purging it of innocent doctors who just want to administer CBT.

They have complained that they are 'being silenced,' shamelessly adopting the standpoint of the oppressed and marginalised. They have accused those who criticise their bad science of being 'activists,' as though they are being targetted by an organised conspiracy.

They have actively promoted practises that amount to unambiguous pseudoscience, because, I guess, they have had enough of 'experts'.

'Cancel culture' paranoia and other right-wing hysterics reveal medical conservatism's true colours

Historian David Olusoga has been speaking about the ironies of ‘cancel culture’: Olusoga, whose work has explored black Britishness and the legacy of empire and slavery, said that people “feel perfectly comfortable making these comments about me without being able to point to a single reference...

thesciencebit.net

Edit: A few more quotes.

 

[MrMagoo]

The claims about proponents of mindbody techniques being suppressed or silenced into the underground reminds me of the following excerpts from a blogpost by Professor Brian Hughes in relation to similar allegations made during the CBT/GET controversy:

'Cancel culture' paranoia and other right-wing hysterics reveal medical conservatism's true colours

Historian David Olusoga has been speaking about the ironies of ‘cancel culture’: Olusoga, whose work has explored black Britishness and the legacy of empire and slavery, said that people “feel perfectly comfortable making these comments about me without being able to point to a single reference...

thesciencebit.net

Reminds me of the Revolutionary Communist Party. Takes me right back to my youth. They liked to debate a lot as well.