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

It's a little more coherent than that, though it's important to add that it's just a hypothesis. I would argue that among PRT advocates the "Fight or Flight" explanation is primarily meant as a way to convey to patients how mind states affect body states in ways that are biochemically measurable. The Fight or Flight response reminds us that *belief* in danger can have dramatic somatic effects. With a sufficient adrenaline surge, you can run on a sprained ankle, and it might save your life. Or your threat assessment may be way off (we're all error prone), and you were never in danger in the first place, but you still ran your ass off on a bad ankle.

You're right that energy surges and the suppression of pain are the opposite of energy disorders and pain syndromes. But the Fight or Flight explanaton doesn't stop at the moment when you have safely fled the real or imagined sabre tooth tiger. The hypothesis is a systemic one, as broadly outlined in the passage you quoted. When threat assessment becomes dysregulated, it can start acting within the space of our own bodies. The medical term for a dysregulated nervous system is central sensitization, which may not be connected to our flight or flight response at all (though it's not entirely implausible that it would be connected.) And there's no proof at present that central sensitization, while predictable and observable in several clinical contexts, is actually the explanation for any given pain syndrome (or fatigue disorder). That part gets overstated by PRT advocates, for what I would hope are largely good-faith reasons.

But the point is, neither is the underlying hypothesis pseudoscience. Dysregulated neurochemical systems are known to give rise to a whole host of somatic symptoms without any underlying local pathology, which puts the hypothesis that some chronic conditions may be dysregulatory phenomena on equal scientific footing with any number of proposed-but-as-yet-unvalidated hypotheses for the same conditions.

Not trying to prosyletize here; I just think some of what gets painted as "woo" in pain science boils down to poor communication by therapy communities who are mostly focused on techniques for which the evidence of effectiveness is stronger that the explanation of the etiology. As a medical hypothesis, it's completely coherent, though of course like all hypotheses it may well completely fail under duress.


@crispscone wrote:

"... it's important to add that it's just a hypothesis. I would argue that among PRT advocates the "Fight or Flight" explanation is primarily meant as a way to convey to patients how mind states affect body states in ways that are biochemically measurable. The Fight or Flight response reminds us that *belief* in danger can have dramatic somatic effects...."


Your sentences about Fight or Flight in ME or LC are as clear as mud.

So are people with ME or LC in a state of permanent Fight or Flight or not?

Or is the 'Fight or Flight explanation' just guff designed to appeal to patients, who appear to have been framed as gullible for the purposes of giving them an enticing, easily repeated, but false 'explanation' for their illness/symptoms.

Because there are tens of thousands (probably more by now) of people with ME or LC who now believe without question that they, and all people with ME or LC, are in a state of permanent Fight or Flight.
Because the patients have been told that repeatedly by sellers of costly commercial Braintraining/Mindbody 'Cure' courses and programs.

Have the patients who now believe that everyone with ME or LC are 'stuck' in permanent Fight or Flight been deceived?

.
 
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It's a little more coherent than that, though it's important to add that it's just a hypothesis.

Isn’t the problem the way the various terms, ‘central sensitisation’, ‘dysregulated threat system’, ‘neuroplasiticity’, etc, are currently used in this field? It is theoretically possible that testable hypotheses could be developed, however I feel that you, @crispscone, are being over generous in describing their current usage as such.

Further I would agree with @Trish that they are generally used because they sound sciencey, but currently this amounts to pseudoscience. Central Sensitisation in particular is a totally circular concept that most use in a way that is completely unfalsifiable. Certainly I see no ground for taking any of this seriously until there are actual hypotheses laid out relating to some form underlying neuro inflammation or neuro over responsiveness that could evaluated scientifically and at least gives the potential for studying something other than questionnaire filling behaviour or clinicians personal beliefs.
 
Gosh, I'd forgotten that thread. It's hair raisingly bad research. Worth reading the discussion.
At least it’s research.
Recent articles in Swiss newspapers aren’t shy to mention websites like cfs-hilfe.ch where the domain owner picks ‘n mixes his own theories on what keeps us ill (Google Translate):
 
I would argue that among PRT advocates the "Fight or Flight" explanation is primarily meant as a way to convey to patients how mind states affect body states in ways that are biochemically measurable.
There is no such thing as «mind states». Everything is biological, or biochemical if you want. The concept of a «mind» is an illusion, and is impossible if you want to adhere to what we know about physics.
When threat assessment becomes dysregulated, it can start acting within the space of our own bodies.
Again, this assumes some kind of «mind» that is separate from the body. It’s the very dualism that the biopsychosocial proponents claim to oppose.

And this statement is too general. We know there are limits to how one thing can affect another. No matter how much you believe (if you’ll allow me to use the unscientific everyday phrasing) that you can turn your skin green, you will not be able to do it.
And there's no proof at present that central sensitization, while predictable and observable in several clinical contexts, is actually the explanation for any given pain syndrome (or fatigue disorder).
Can you provide any sources for the claim that CS is «predictable» or «observable» in «clinical contexts»?
That part gets overstated by PRT advocates, for what I would hope are largely good-faith reasons.
Why would we assume good faith on their behalf? They have a very long track record of exaggeration and lying about everything from their own data to threats and needing protection from the police.
 
It's a little more coherent than that, though it's important to add that it's just a hypothesis. I would argue that among PRT advocates the "Fight or Flight" explanation is primarily meant as a way to convey to patients how mind states affect body states in ways that are biochemically measurable. The Fight or Flight response reminds us that *belief* in danger can have dramatic somatic effects. With a sufficient adrenaline surge, you can run on a sprained ankle, and it might save your life. Or your threat assessment may be way off (we're all error prone), and you were never in danger in the first place, but you still ran your ass off on a bad ankle.

You're right that energy surges and the suppression of pain are the opposite of energy disorders and pain syndromes. But the Fight or Flight explanaton doesn't stop at the moment when you have safely fled the real or imagined sabre tooth tiger. The hypothesis is a systemic one, as broadly outlined in the passage you quoted. When threat assessment becomes dysregulated, it can start acting within the space of our own bodies. The medical term for a dysregulated nervous system is central sensitization, which may not be connected to our flight or flight response at all (though it's not entirely implausible that it would be connected.) And there's no proof at present that central sensitization, while predictable and observable in several clinical contexts, is actually the explanation for any given pain syndrome (or fatigue disorder). That part gets overstated by PRT advocates, for what I would hope are largely good-faith reasons.

But the point is, neither is the underlying hypothesis pseudoscience. Dysregulated neurochemical systems are known to give rise to a whole host of somatic symptoms without any underlying local pathology, which puts the hypothesis that some chronic conditions may be dysregulatory phenomena on equal scientific footing with any number of proposed-but-as-yet-unvalidated hypotheses for the same conditions.

Not trying to prosyletize here; I just think some of what gets painted as "woo" in pain science boils down to poor communication by therapy communities who are mostly focused on techniques for which the evidence of effectiveness is stronger that the explanation of the etiology. As a medical hypothesis, it's completely coherent, though of course like all hypotheses it may well completely fail under duress.
Hi @crispscone! Thanks for joining the discussion. I can sympathise with some of the things you say and I don't think anybody has problems with hypotheses, as long as they are also treated as such, which all to often does not seem to be the case. Unfortunately, it seems to me that this "woo" often impacts the lives of people quite directly.

Moreover, I'm usually left wondering about the following
I just think some of what gets painted as "woo" in pain science boils down to poor communication by therapy communities who are mostly focused on techniques for which the evidence of effectiveness is stronger that the explanation of the etiology.
Is that really the case though? I have not come across such strong evidence, perhaps this exists in other fields outside of the ME/CFS realm, could you perhaps provide some evidence that would be useful to this discussion?
 
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I would argue that among PRT advocates the "Fight or Flight" explanation is primarily meant as a way to convey to patients how mind states affect body states in ways that are biochemically measurable. The Fight or Flight response reminds us that *belief* in danger can have dramatic somatic effects.
It's a possible interpretation of this model. And it is a model, not a hypothesis. It's not very convincing, as it seeks to explain symptoms, rather than coming out of real observations. It's a retro-explanation, it mostly takes things that happen after, and reattributes them as their own cause. Grandfather paradox in a model does not make for good science.

The main problem with this interpretation is that it does exactly the same thing as "lie detectors", aka polygraphs. Polygraphs do detect a physiological response. It has nothing to do with lying, or honesty, or any combination of that. It's, in fact, entirely useless at "detecting lies". Where there is a physiological response of sorts, there is nothing actually making any connection to a model that attributes it to a preferred explanation, it's purely circular interpretation based on asking about symptoms, and finding that a model based on fear, for some reason, can explain anything.

To people who pretty much have no fear, this is especially silly. All those people making up narratives about what we think and believe, when we do none of those things, and meet none of the requirements they speculate about. I don't have a clue what this model goes on about fear and threats, it's not even something I ever experienced once in my life. Same with trauma. They might as well be talking endlessly about my fifth arm.

The celestial spheres model was very compelling for millennia. It was believable, yet completely wrong. It modelled circular orbits, which are actually parabolic. Close enough to the naked eye, does not stand up to any scrutiny. Still stood strong for millennia, because we could not do the required scrutiny. The odds of anything in those models being close to reality is so far-fetched it's not even worth considering, but for sure they will definitely claim the equivalent of "well, a circle is sort of an ellipse", which, while true, is entirely irrelevant.
 
I know this thread has gone on way too long but a couple things: I find the fight-or-flight brain loop theory plausible, I think Jonathan hypothesized something similar sounding, some faulty danger threat signal switching off full metabolic capacity. But even if it is that, there's no reason to think we can consciously change our deep neurological processes through brain rewiring or whatever else.

Also these people tend to think any immune system issue is downstream from the neurological issue, but it could easily be the other way around or some kind of interaction. They need to think that to hold up their theory. There's also way too much conflation of "brain" with "mind" to make the theory sound more technical when they usually mean the latter.

Since the Wired article came out, I've been talking to all these mind body brain retraining people, including Alan, pretty extensively, genuinely seeing what they had to offer and what they thought, and I'm absolutely convinced they are all 100% bad faith. I was told that Maeve wouldn't have died had she addressed her underlying stress. This wasn't some rando but a fairly well known x account in this space.

That is actually insane, and so unbelievably cruel, and it flows very directly from the idea that the illness is not entirely physical or can be cured with mind-body interventions. Night follows day. I'm pretty sure they know how cruel it is in practice but pretend not to.

As has been pointed out, I think all this stuff is just a rebranding of the same harmful nonsense that's plagued us for decades, old wine new bottles. Because long covid is yet unresolved they think oh maybe the whole biomedical approach is flawed and we need to try something new, even though what they're pushing is not new or interesting at all and is actually very counterintuitive and strange. Where's the evidence!?

Why is it so hard to understand that some illnesses just haven't been resolved yet and that doesn't make it some weird psychologically-tinged phenomena? Why is this stuff always framed as an alternative to actual medical treatment, and why are patients always the villains in the story?
 
Pain Reprocessing Therapy.
Here’s the biggest study on it to date.

At the 5-year follow-up, the care-as-usual and PRT arms reported about the same pain levels.
Which makes it NOT therapy then. And so shouldn't get to use that term? Just a task to get people in large amounts of pain to spend their time/mind energy on?
 
These people really know a thing or two about stress. That sentence alone is stressful.
I don't like drawing on that example at all as its repugnant they do it. But I do have to point out (as we are talking about bad faith) the common sense that if someone is starving to death then the easiest way to reduce at least one stress isn't to withold providing appropriate, timely, medical and support for feeding 'on principle' or because of 'beliefs'.

So the entire raison d'etre being claimed is utter nonsense when it becomes clear it is suggested in order to justify witholding (or delaying) of access to normal medical care (not 'medicalisation' as they try and propaganda it to when it is a woman with ME/CFS rather than any other patient)

The fact they want to use this example themselves indeed starts to make it clear what the 'faith'/.end game actually is that's being sold and how very real this is all about - soften it all they want by pretending the 'beliefs' are for the good.

This isn't just a masseuse inappropriately calling a massage they offer a therapy to a customer who can walk away but marketing targeted directly at those who surround very ill persons (just look at where they place their articles and how all of them focus heavily on suggesting its 'for someone you know' rather than the person themselves, unlike other articles from other areas and proper professionals about other illnesses so it is almost a tell-tail signal in their communications that its written to 'others')
 
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But the point is, neither is the underlying hypothesis pseudoscience.
It is when it is not even close to being adequately substantiated and is being prematurely rolled out in clinical and medico-legal settings, in a reckless unsafe manner, which it has been for decades, and still is in many clinics.

As a research hypothesis it may (may) have some use, but otherwise it should not be part of clinical practice at this stage.

We are not inconsistent about this. We hold the same views on premature applications of inadequately substantiated biomedical models. Which so far is all of them.

I will take the psycho-behavioural central sensitisation, etc, speculation more seriously when the advocates start showing a ship load more humility and restraint, and proposing much more robust and falsifiable experimental tests of their hypotheses, and start conducting and reporting them more honestly.

Their persistent decades-long failure to do so, of which their are countless examples discussed on this forum in gory detail, does not speak well to their integrity and good faith.

Why should we take such people and their ideas seriously, let alone politely? The damage they have already done to our lives over the decades, and apparently have every intention of going right on doing with grossly inferior science and clinical practice, is utterly appalling.

...boils down to poor communication by therapy communities who are mostly focused on techniques for which the evidence of effectiveness is stronger that the explanation of the etiology.
Oh please. This is not a problem with bedside manner or marketing, or 'anti-psych' stigma in patients, etc. That is just convenient well-worn excuses to deflect responsibility. Your premise is simply false.

It is a fundamental problem with the product. It has been given a very – some might even say overly – generous chance at proving itself, for decades, and it has failed.

The results from this grand project are quite simply weak as piss. They are way past being 'promising new insights', and 'encouraging early results', blah blah blah. The psychosomatic advocates have not shown meaningful (and safe) therapeutic benefits on any robust methodology.

That is not just our view. That is the view of a number of major medical bodies and authorities, going back to the IOM report in 2015, and several since then in different countries. You can't just gloss over that.

There are also a body of subsequent reviews and papers concluding that as of this stage we have no good explanation nor therapies for this condition. Time psychosomatic advocates accepted that reality and got to work on lifting their standards and stopped demanding they should be allowed to keep arbitrarily lowering them until they can claim a 'result'.

The critics are not the problem in this game. Those refusing to use robust methodology and not overreach in their conclusions are the problem, and always have been. Take up your complaints with them.

Do you understand how bizarre it is that it is patients are asking for higher technical (and ethical) standards, while an influential chunk of the medical profession rubbishes us for it and insists they should be allowed to arbitrarily lower the technical and ethical bar for their own work, all while insisting non-psych research meet almost impossibly high standards, way past anything the psychosomatic advocates use for its own work? All at our damn expense.

Do you even begin to understand the situation we are now in, in every sense, including the vicious defamatory assault on our very reputations, as a result of this complete failure of medicine to maintain some basic standards, and its flat refusal to admit all this?

We have a profound right to object strongly to this deeply entrenched, decades long reign of incompetence, insanity, and refusal to reform the whole shit show, and the utterly appalling consequences for our lives.
 
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From David Tuller‘s Blog


Last week, David Putrino, a neuroscientist and director of rehabilitation innovation at Mt Sinai Health System in New York, and a prominent investigator into possible biomedical mechanisms driving Long Covid, posted a call on social mediafor retraction of the article. His call appeared in response to an open letter to Wired posted by Scott Hugo, a housing rights attorney with Long Covid from Oakland, California.

I don’t expect much from Wired here. What has happened so far does not convince me that Wired, whatever its reputation, is “better than this,” as Putrino stated. I assume some of the country’s leading Long Covid advocates and advocacy groups have reached out to Wired privately to discuss the article, as would be common in such situations. Assuming that has happened, there have been no apparent impacts to date.

Wired has already failed to respond to what is clearly a serious violation of journalism ethics and practice. The story criticized an unnamed law professor for damaging scientific research, failed to follow basic journalism practices to seek her response, and then provided enough details about her for anyone to surface her name within seconds–in effect “outing” her to public scrutiny. In a tone-deaf series of responses on X, Levinovitz dismissed criticism of his actions as “wild” and “absurd.” (I wrote about this situation here.)

The violations of practice and ethics are glaringly clear to anyone who has taken Journalism 101–or anyone with common sense. Wired certainly understands that Levinovitz and the editorial team screwed up here. But they have ignored the two e-mails I sent raising questions about this matter.
If Wired can’t even be honest in acknowledging and making corrections, it would be foolish to expect honesty in how they deal with larger issues about the piece.
 
@dave30th is continuing his deconstruction of AL‘s Wired article.


I am reposting below a blog about a “living systematic review” of interventions for Long Covid, which was published by The BMJ in late 2024. This systematic review figured prominently in the opening of the recent Wired piece about mind-body interventions for Long Covid. (I’ve posted about the Wired piece here, here and here.) The journalist—Alan Levinovitz, a professor of religion at James Madison University in Virginia—presented the systematic review’s conclusions uncritically. He did not discuss the review’s serious shortcomings, which raise questions about the reliability of its conclusions.

Here’s what Levinovitz wrote in Wired about the systematic review near the top of his story:

“The BMJ’s systematic review of ways to treat long Covid lists two as supported by moderate evidence, cognitive behavioral therapy and physical exercise. But if you attended the third annual Long Covid International Conference in Boston—as I did, late last year—you’d think the BMJ was encouraging medical malpractice. During two days of presentations, the world’s leading scientific authorities brought up exercise only to warn against it. Cognitive behavioral therapy received just one mention: ‘not recommended.'”

For Levinovitz, this negative attitude toward cognitive behavior therapy (CBT) and exercise is odd and hard to understand. That’s not surprising, given his apparent belief that 60-80% of Long Covid cases are “psychogenic,” per an X posting last year. However, what is actually odd and hard to understand is why major journals like The BMJ continue to publish work featuring errors that would be obvious to first-year epidemiology students at Berkeley.

Perhaps the Long Covid International Conference attendees didn’t focus on these interventions because they knew that many of their patients had already tried them and had not improved, or had even gotten worse. Or perhaps the attendees already knew not to take these studies at face value. In unblinded trials of non-pharmacological interventions, reports of modest improvements in subjective measures are to be expected–even in the absence of an actual therapeutic effect. The study design alone ensures the presence of an unknown amount of bias, so findings must be taken with a huge amount of skepticism.

My colleague and friend Brian Hughes, a professor of psychology at the University of Galway, in Galway, Ireland, was less enamored of the BMJsystematic review than Levinovitz. Back when it was published, he issued a sharp critique on his blog, The Science Bit. His post was titled “That BMJ review of Long Covid therapies does not show what it says it does.” Here’s a taste of his view:

“The authors are able to produce their findings only by looking at studies they themselves declare are biased. When these biased studies are excluded, the so-called evidence disappears…The BMJ review reveals that there is, in fact, NO UNBIASED EVIDENCE THAT CBT OR PHYSICAL REHABILITATION IMPROVE SYMPTOMS OF LONG COVID.”

Below is my blog about the systematic review—first posted on December 3, 2024. The review’s findings on exercise and CBT were largely based on two trials.

As I pointed out in that blog, the main trial in the systematic review that appeared to support exercise had been slapped with a major correction earlier in 2024. The correction made it completely clear that the trial’s findings only applied to patients who had been hospitalized for COVID-19, not to the larger Long Covid population. This key information does not appear in the most high-profile sections of the systematic review–even though the review was published after the correction.

In the trial that reported modest improvements in self-reported fatigue with CBT, the investigators had null results for their sole objective results–how far participants moved, as measured by a wearable device. Then, in a troubling lack of transparency, they failed to report these null results in the published paper. The systematic review, of course, also failed to mention the null results.

In any event, if experts at the Long Covid International Conference had read the BMJsystematic review, it wouldn’t be surprising if they ignored the conclusions–even though Levinovitz found the situation perplexing.
 
By Ted Monroe:
"Many people reading this may be familiar with a recent article on Long Covid recovery stories and ‘brain retraining’ published in Wired by the professor of religion Alan Levinovitz. In this piece, Levinovitz argues, somewhat bumptiously, that the sick patients who vehemently criticised ‘brain retraining’ as a valid treatment were exhibiting behaviour typical of religious belief: they believe, he argues, so fervently in a biological cause of illness that they neglect to consider non-pharmaceutical, mind-body treatments, such as ‘brain retraining’ that could actually help them, and crucify anyone for suggesting these practices.
Now is not time to exhume that argument, which, for many of us, has been laid to rest by virtue of our having tried brain re-training and gutted our health, but could I politely suggest that he might have considered the opposite: that the truly religious response might actually come from the Damascene converts who have undergone a miraculous recovery and are now trying to preach the truth of their experience to the rest of us. Ironically for a professor of religion, Levinovitz is surprisingly blind to the converts in his midst – and perhaps to his own impulses."

 
It also shifts responsibility back onto the patient, as well as making them an object to be related to as opposed to a participant; we become problems to be solved as opposed to patients to be cared for.
A very convenient coincidence of timing with the sustained increase in long-term pressure on health and welfare budgets.

It is just a excuse generating and responsibility avoiding mechanism.

This is a group of patients laying in the mud, being kicked over and over, sometimes since childhood, until they’re so traumatised they don’t remember what safety feels like, including some who never got to experience it in their life, and we’re going to tell them to focus on thinking correct thoughts, while they are fighting to get their basic needs for survival met?

Online you’ll find a lot of young adults with ME sharing about living in an abusive situation at home that they can’t escape. Being given too little food, being mocked, and having zero emotional support, having missed out on their teenage years, while their peers experienced romantic relationships, gained independence and are creating families. All this suffering is in addition to the suffering from the illness itself.

If we wanted to calm the nervous systems of these ME patients, the first thing to focus on is adequate food, social belonging, kindness, necessary support for hygiene, access to medical care for unrelated issues that many with ME can’t access right now.
This.

I think the persistent failure to control for these factors, and instead just ignore or misrepresent them and the consequences, is a deliberate strategy, because adequate control and honest reporting of the results would expose the empty nature of the psycho-behavioural morality play soaked claims about us and the mistreatment of us.

----------------

Thank you for this comment, @Trish.
 
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