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

[dave30th]

As for the clinical trials? There are many things I didn't include in the piece. I'm frankly not sure which trials she's talking about, as I've disengaged on Twitter.

I think it takes guts for Alan to come on here in the first place. But this sentence is disingenuous. The point isn't about including some random clinical trials out of many. It's about disappearing the existence of two--well, three--trials into the very mind-brain programs he is writing about. He suggests that these trials cannot be done because of a hostile online community. And yet they have been and are being done. So it's not about some trial no one could know about being done on Pluto. It's about three trials--two into the Lightning Process, one into Gupta--into the very thing he says can't or isn't being studied. He makes a major charge--this stuff can't be studied--and then doesn't include the key information that would undercut that charge.

 

[dave30th]

I don't engage with Tuller anymore after a number of personal correspondences

And I welcome his disengagement. When someone repeatedly denies that including enough information about someone to have their name surface immediately in a search is not "outing" her to the public, it indicates to me that that person isn't seeing things clearly. When someone as smart as Alan declines to acknowledge that, as in PACE, dramatically lowering your key outcome thresholds after gathering data to such a degree that particpants can be "recovered" on your two key variables at baseline, and then turns that into a "he said, he said" debate, they're not dealing honestly with the data. So yes, it's pointless to continue engaging.

 

[Trish]

Well that was an interesting read over my breakfast.

@listeningandlearning, I have much to say. Just a simple point for starters.
Your first post in this latest flurry of activity was posted in the middle of the night UK time. I was, thankfully and fairly unusually for me, asleep. You accuse us of not engaging with your substantive points. Give us a chance, please.

I am also a forum moderator and see that your posts have unsurprisingly triggered some strong reactions, some of which may be forum rule breaches. I ask members posting here to consider the work this is creating for the mod team, all of whom are sick and struggling to keep up.

 

[Turtle]

Maybe mentioned before, this thread is exploding, too much for my brainfog.

Maybe the proceeds of the soon to come book can go to Sequence ME (Chris Pointing) At least some good can come out of it.

And writing over the backs of patients should never be for profit. I suppose working Pro Deo means something to you @Learningandlistening , protecting the vulnerable obviously does not mean a lot.
I studied what you studied untill the devil took over in my final year and gave me ME/CFS and brainfog? That's sick.

Sow the wind and reap the whirlwind, good luck with what you will reap on social media with this article and the book.

 

[Trish]

Since you all like tough love, I'm going to give you some. It's not going to be about the WIRED piece, or any of the arguments I've made here and elsewhere. At least not in a direct way.

I find that problematic. This thread is about the Wired piece, so why not address the points members have made about it? Why deflect into something unrelated?

Instead, I'm going to start with Mr. Magoo, who seems to be accusing me of...not welcoming debate and discussion? I think this (hilarious) accusation is quite instructive. I've spent a great deal of time here, on Twitter, and in personal correspondence and conversations with people who have reached out to me, discussing and debating my WIRED piece. Hours and hours and hours. In any normal reality, this would be an astonishing level of engagement. I have my life, my work, my friends, my wife and daughter.

But Mr. Magoo is part of this community. And in this community, if one is not endlessly on call, constantly responding to everything, tethered to their computer and spending every waking minute researching and thinking about this topic, they are blowing the topic off.

Perhaps you need to reconsider this characterisation in the light of our reality. For the first dozen years of my ME/CFS, I was still able to work part time and raising a family. I did my best to ignore my illness and get on with life. I had no time or inclination to study the research or meet with other pwME. I had no preconceptions about the cause and there were no specialist services so I took my GP's word for it to just try to get on with life.

When I became too sick to work and had to take early retirement I spent the next dozen years trying to make a life for myself as a retiree who could go out only about once a week and had a sick daughter to look after. I studied all sorts of things and tried to maintain local friendships.

The last dozen years, as I gradually got much sicker and could no longer maintain social activities, I discovered vibrant online communities of scientifically minded pwME getting together with scientists and clinicians to try to help push research forward, advocate for better research funding and provide each other with some much needed semblance of a social life and mutual support.

Just imagine, if you can, what it's like for someone like you with a successful academic career being forced by illness to give it up and even to pay people to wash you and prepare your food, and being stuck at home unable to see local friends because having visitors is too exhausting and makes you crash.

Imagine also what it's like to have a GP who tells you to 'try to get more exercise' when you know from bitter experience that decades of doing just that in order to care for and support a family has resulted in getting much sicker.

Now imagine, if you will, that you discover you can have a role again outside your home as a useful member of an online community of very smart and caring people. Wouldn't you take up that opportunity too?

Or would you sneer at them as being obsessed and say things like:

And in this community, if one is not endlessly on call, constantly responding to everything, tethered to their computer and spending every waking minute researching and thinking about this topic, they are blowing the topic off.

And that's not even true. Most of our members with ME/CFS are either too sick or too busy trying to maintain the remnants of a 'normal' life to spend much time here. Some of us do, because it's the the only opportunity we have for intelligent and interesting conversation where we are (usually) not patronised or seen as malingerers or obsessives or judged and found wanting in other ways.

 

[JellyBabyKid]

Why should sick people feel shame or guilt in the first place? What possible (legitimate) purpose can that serve? Do only psychologically and morally inferior people get sick?

This really bothers me.

Especially having actually read some of the paper that a key proponent of the mind body paradigm posted in a twitter thread on this discussion which included;

Predisposing factors may include the person’s sex

The stages of self-change, often used in smoking cessation, can help the general practitioners

Which suggests that yes, that there are people who do think that only psychologically and morally inferior people get sick, which is how we get told

"‘You don’t want to get better’" https://www.theguardian.com/comment...atigue-syndrome-me-treatments-social-services

As I said previously;

When I saw the ME clinic, I was encouraged to include a two minute walk in my day I was literally stopping doing an activity of daily living such as showering or cooking to be able to do this walk.

I still didn't improve, I was just making my life harder by using my available energy to walk instead of on my activities of daily living.

ME does not respond like you would expect that you can habituate to an activity and gradually increase it every time you try and increase it PEM slams you back HARD.

This is not lack of engagement, or lack of belief or lack of trying, it is a biological reality that I have been told repeatedly, by multiple medical professionals, to stop arguing with.

The symptoms have not improved, and the self doubt never leaves because of these kinds of discussions.

How and who does that help?

 

[Sean]

Levinovitz says: I also believe that so-called "mind-body" therapies are quite difficult to trial — this is a longer discussion, but an important one — in the same way that all forms of therapy are difficult to trial, because they depend on trust and therapeutic alliance.​

In which case there is a lower level of epistemological power and certainty, and hence less right to assert definite causation and benefit.

And the rage on social media, sadly.

My feeling is that trying to engage with AL on social media – and particularly X – is probably counterproductive. It will just generate more publicity.

My initial reaction. But I increasingly think he has done far more damage to himself than we could ever have done, and that letting his words, and the responses from others, stand for all to see will be a better long-term outcome for his critics.

Humans love magic. In the end this is what it's all about.

The 'ol mind over matter. The Holy Grail of human desire.

You have suggested that somehow mind is something supernatural yet which can fit with neuroscience. It seems to me that you are a very long way away from understanding the basic metaphysical issues involved.

Not to mention epistemological. That all important methodology business.

I'll leave you with a quote by your favorite author - Alan Levinovitz.

"look, if someone has come along and told you they have the key to fixing yourself spiritually, or even the key to healing yourself, that is a person you ought to be very, very suspicious of"

Nice catch.

note the repeating pattern of AL not being allowed to talk about something:

By talking all about it.

Big brave transgressor, isn't he.

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

Associate Professor Alan Levinovitz (aka @Learningandlistening),

Bit of free advice from a very old and battle hardened hand at this game: Stop digging.

 

[Trish]

I even wrote about long Covid for VICE in 2021, when I knew less about "the" condition (not really a "the" but let's leave that aside for now).

Yes, I read it. It was very good. Please can you answer a simple question. What changed your mind? Who or what persuaded you to switch sides so drastically? What was it they said or wrote that persuaded you to both reject your own VICE piece and to make this new (to you, but actually dating back decades) viewpoint the subject of articles and a book.

And here is something I can tell you with unequivocal certainty, a foundational truth in my own area of expertise. Monomaniacal obsession with a topic, in a community of people who share the same obsession, when physical health and personal identity (yes! even if you don't see it!) are on the line — it is not conducive to finding the truth. There may be excellent expert discussions — the best 9/11 conspiracists knew more about concrete and steel beams than most engineers — but when it comes to truth-seeking, it is far from ideal.

You mistake scientific interest and mutual support and creation of community in people isolated from the 'normal' society you are able to enjoy for monomaniacal obsession. I explained my situation in a previous post. I won't go on except to say your view is insulting to many very sick and isolated people who your 'normal society' fails to support, instead choosing to sneer and accuse.

To return to your article. I have a simple question:

Why did you think it appropriate to foreground accusations that have nothing to do with most or all people with LC and ME/CFS? Why damn us just because some people unknown to us may have threatened or verbally attacked some researchers or other sick people? Why frame your article with the patent falsehood that nobody is allowed to talk about brain retraining?

To put it another way, can you even begin to imagine what it is like as a sick person to have your friends and family and clinicians reading articles in which you are characterised as nasty lunatics who won't allow people to talk about recovery? To have the few people you still see telling you you're not trying hard enough to get better, that you don't want to get better, that you're malingering?

I've had to sack professional carers here to help me wash telling me I don't have a real illness, that I just need to go for a nice walk, that I don't want to get better. Can you imagine what that is like? Your article, if any of them read it or the repurcussions form it, will add to that for many of us.

In THIS community, on the other hand, the non-negotiable truth is that "BPS" — whatever that means — is bad and false, and it is impossible that anything involving the "mind" is involved in sustaining the symptoms of ME/CFS. By mind rather than brain, I mean...well, I would try explain, as it's very complicated and difficult, but I won't, because this is the moment at which this particular community deploys its rhetorical defense mechanisms. "We've heard this before! It's the same BPS nonsense!" Those simpletons still puzzling over how to understand the relationship between mind, brain, body, and community, the philosophers struggling to articulate how those words themselves aren't helpful — if only they popped over here, to Science4Me, where it's all been figured out.

Allow me to suggest to the lions in this den that perhaps you have more in common with the hEDS "zealots" than you might think. (It is, of course, a feature of these communities that they are incapable of seeing their resemblance to other communities they scorn.) Perhaps you, too, have hidden some unfalsifiable truths under piles of research and discussions. Perhaps, if you stopped thinking about this in terms of the research, and started looking at yourselves from the lens of sociology, or, dare I say it, religious studies, you would see features of a community that, rather than conducing to the discovery of truth — though they may do that — are also serving another purpose.

None of this makes sense to me. I am a scientist by training. I don't need the lens of sociology to tell me that the PACE trial was fraudulent. I have decades of my own and my daughter's experience, as well as thousands of others testimony, showing me that for people with post exertional malaise, pushing to try to do more makes us sicker.
Long before I joined online communities I read the PACE trial paper and the newspaper articles saying pwME could recover with a bit of exercise. I saw a feeble set of data with barely any between group differences, and certainly not clinically significant. I knew from experience it didn't make any sense for me.

It was only later I came to understand through analysis of the raw data and learning about the underhand way the data was manipulated, and the conflicts of interest of the leaders of PACE that I came to see the full horror of it. I found the whole saga profoundly shocking. What I had thought of as mere weak data turned out to be much much darker.

As I have not oriented my existence around the interests of this particular community, I hope not to be accused of delinquency when I leave this here and don't reengage with it for a few days or a week. No doubt the lions will have torn it to shreds! I look forward to seeing how they've done so.

You make it sound like a game. I find that disturbing. And still no engagement on the substance of our criticisms.

Edit: I encourage everyone watching this debate to look through my Twitter. You may disagree with me, but in general I do my best to be civil, admit when I'm wrong, and share criticisms of my piece when I can.

I read some of it. Like many I left Twitter some time ago when it changed ownership and became a cesspit with algorithms that promote dissent and hate. I fail to understand why anyone with a conscience would still patronise that site. And I can't follow Twitter conversations - they're too disjointed and the posts to short for any in depth discussion.

Looks like no one has any answers to my last response beyond ad hominems or snide remarks. I said I'd engage in a week. But I don't have time for anyone who doesn't actually come into *my* lion's den and confront my actual points.

Give us a chance. I've only just read them. I have for once been blessedly asleep.
Perhaps next time instead of wasting time criticising forum members you will youself engage with us on the subject of your article.

I only have time for people with the courage to address what I actually write and argue. Frankly, I hope when I come back in a week, there's more than the juvenile garbage I've seen tonight. Because that only confirms what I already thought. This community, despite its expertise, has some things about itself it can't really confront. You can dish it out, but you can't take it. "Sea lioning." "I abandoned interminable debating by my mid-twenties." "Jonathan Edwards is an Emeritus professor." "He's just trying to create division."

Again, give us a chance. Moderators are sick volunteers, some of us even sleep sometimes.

A little observation. Some members wanting to discuss an article or some science will simply step around posts where someone is letting off steam or expressing discomfort with the topic in colourful ways. In particular, it's probably more productive of useful discussion of a topic if you simply step around those posts that you don't consider useful. Listen to them, learn from them, acknowledge that some people are upset or angry, move on.

Look at yourselves. So cocky in the lion's den. I'm here alone. And that's all you've got? And yet...why should I be surprised. It's the rhetorical defense mechanisms that are so typical of the kind of communities I study.

Tough love. I've taken it for over a week. I've learned a lot! Your turn.

Oh for goodness sake listen to yourself. You see cockiness, I see sick people angry and distressed. Don't you think we have a right to be angry at an article that so maligns us, and gets so much wrong? You can walk away for a week and play happy families and go back to your job, doubtless to tell colleagues something unkind about us. We can't. We remain sick. Many of us tied to our beds and now confronted by an article that may, or perhaps has already, make our lives more difficult as we face more misjudgement from those we depend on for survival.

I don't engage with Tuller anymore after a number of personal correspondences. I did for a while. What I want is for you, here, to engage with what I wrote about insular communities, unfalsifiable foundational truths, and the parallel to hEDS. When that happens I'll engage again. If it's just "but Zeynep!" "but Tuller"? Then I'm out. I have better things to do with my time, like multi-hour Zoom calls with people who read my piece, hated it, but also want to know where I'm coming from.

So engage with the substance of our comments and stop maligning us.

I've engaged more than enough with many critiques you've offered. I've engaged with your own sneering, patronizing tough love. Just read any number of the responses to me here! It's time for you to engage with mine, on my terms. It is characteristic of insular defensive communities to continue redirecting arguments towards the defense mechanisms they've developed. I have no time for that. Engage with my critiques now that I've engaged with yours.

But you haven't.
You haven't answered questions about how you came to do a complete about turn after your VICE article. You haven't answered questions about what efforts you made to verify your assumption that thousands have been cured by brain training, all you gave in your article was a few anecdotes and some links to websites with brief recovery stories, at least one of which is advertising by a promoter who makes a living from selling expensive brain training. That's not evidence. You haven't addressed research on brain training that David Tuller and others have pointed to.
You haven't addressed the issue of those who got much sicker with brain training and gradual activation therapies.

So my suggestion, if you return here.

Look at the posts you don't like that criticise you but don't address your article directly, not as signs of obsessive blinkeredness, but as signs that you got something badly wrong and people are hurting.

Then move on and address the comments and questions about your article.

Oh and a final point. You will see from our rules that we don't give permission for forum threads, whether public or members only, to be used as source material for any sort of research. To me this includes any quoting of posts here in your future writings without the individual poster's explicit permission. I trust you will respect this, and have not come here merely to provoke in order to harvest juicy quotes that enable you to further paint us as loony obsessives or worse. I trust you are better than that.

 

[Lou B Lou]

In the discussions of Braintraining/Mindbody/NLP ME/LC 'cure' programs/ courses, it's useful to know what courses are currently being sold. Then S4ME members can if they want check out the content of the specific courses.

It would appear that @Learningandlistening believes that 'therapeutic alliance' is a vital component of braintraining/mindbody/ 'cure courses. But that is just not the case. Many of the courses consist of only pre-recorded videos and online written texts. So no actual contact with the course seller. Braintraining/mindbody cure courses are Not psychotherapy, the trainers are not qualified/licensed psychotherapists and are not regulated in the way psychotherapists are.

*Anyone* can set up and sell Braintraining/mindbody 'cure your ME/LC' courses/programs.
And they do.


Mindbody Cure Programs List. (You can read the list without paying. The Guide, which has to be paid for, consists of testimonials). It's not clear if this list contains only the courses endorsed and promoted by Liz Carson.

Not a recommendation




Not a recommendation:

'Heal with Liz' (Liz Carson) sells a Guide to the various Braintraining/Mindbody' CFS' cure programs for $27

'Our guide factors authentic feedback from real people who did these programs.'

https://healwithliz.com/programs-guide/
.

 

[Lou B Lou]

Has @Alan Levonovitz left the forum?

 

[Trish]

Has @Alan Levonovitz left the forum?

I think in an earlier post he said he'd be back in a week.

 

[Chandelier]

Has @Alan Levonovitz left the forum?

I don’t think so.
Remember, he’s @Learningandlistening

 

[Lou B Lou]

I don’t think so.
Remember, he’s @Learningandlistening

Duh

 

[dave30th]

I fail to understand why anyone with a conscience would still patronise that site

I agree with many or most of what you write, but not this. Yes, X is a cesspool. But it is still a place to share things and there are people on it who converse and debate in good faith. Yes, it's disgusting. Yes, I'd rather not be on it, and sometimes I avoid it for long-ish periods. Many people on this forum are on X. I gather they all have consciences!!!! (I realize your comment was a bit of hyperbole to make a totally understandable point about X.)

 

[Lou B Lou]

I'm still on Twitter/X because I just can't go through the long, long learning process to get set up on yet another online system, ie Bluesky. It took me years to work out how twitter operates, then longer/more energy out to find people, and to get established so more than half a dozen people could see my tweets. I just can't go through it all again.

 

[Learningandlistening]

You have now made it clear, Alan, that you have not actually understood the situation in this community.

BPS is shorthand for a group of people who in the past have propounded a particular theory.
What historically is not in doubt is that these people have proved incompetent, most obviously in their dissemination of treatments that were inadequately tested. Moreover, their flagship trial, PACE, if nothing else, showed that their BPS theory was empirically wrong. The prediction was that a change in mental approach to illness would lead to an improvement in disability. There was some evidence. of a change of mental approach but there was no evidence for a corresponding improvement in disability.

And to conflate BPS with "mind" begs the question as to what "mind" is supposed to be. Just yesterday I was invited to submit an article to a special issue of a neuroscience journal on 'Rethinking the Brain, Conceptual Challenges in Neuroscience' in recognition of my previous work on mental representation. (You may not have been aware that my main academic interest is in the structure of what you call "mind".) You have suggested that somehow mind is something supernatural yet which can fit with neuroscience. It seems to me that you are a very long way away from understanding the basic metaphysical issues involved. This is no surprise to me having spent a year studying in the philosophy department at King's College London. Modern academic philosophy has failed totally to keep up with growth in human knowledge in terms of biology and physics in the twentieth century. (Remember that I am also a card-carrying philosopher. I was for ten years on the editorial team of Journal of Consciousness Studies.)

Members here object to bringing in psychological theory partly because, as has always been evident to me as a physician, it is almost entirely bullshit with no empirical foundation, and partly because most of them have tried to make use of 'mind over body' and found it to be a miserable failure.

The intellectual community here is way ahead of any academic department I have ever worked in - whether biomedical or philosophical. People here see a straw man a mile off, so there is no point in presenting us with one. You have not taken on board the basic knowledge required to address this problem usefully; people here have. I am afraid to say that my comment about humanities voyeurism seems to have been justified. And it does untold harm.

"The intellectual community here is way ahead of any academic department I have ever worked in"

The hubris is off the charts. I'm afraid it's not going to be productive to try to reach people who believe this about themselves, or are encouraged to do so. You seem to be the beating heart of this hubris, Jonathan, though I'm not going to make a study of it. I guess the rest of the world should sit back and allow this community to lead the charge on multiple fronts: philosophy, science, everything really. And when they need a token expert, it will be you, one of the greatest minds ever to grace this earth, across multiple disciplines. Modern academic philosophy, gone with a wave of the hand, from the "card-carrying philosopher" who edited the Journal of Consciousness Studies. As they say here in the South, "bless your heart."

 

[Learningandlistening]

Yes, I read it. It was very good. Please can you answer a simple question. What changed your mind? Who or what persuaded you to switch sides so drastically? What was it they said or wrote that persuaded you to both reject your own VICE piece and to make this new (to you, but actually dating back decades) viewpoint the subject of articles and a book.


You mistake scientific interest and mutual support and creation of community in people isolated from the 'normal' society you are able to enjoy for monomaniacal obsession. I explained my situation in a previous post. I won't go on except to say your view is insulting to many very sick and isolated people who your 'normal society' fails to support, instead choosing to sneer and accuse.

To return to your article. I have a simple question:

Why did you think it appropriate to foreground accusations that have nothing to do with most or all people with LC and ME/CFS? Why damn us just because some people unknown to us may have threatened or verbally attacked some researchers or other sick people? Why frame your article with the patent falsehood that nobody is allowed to talk about brain retraining?

To put it another way, can you even begin to imagine what it is like as a sick person to have your friends and family and clinicians reading articles in which you are characterised as nasty lunatics who won't allow people to talk about recovery? To have the few people you still see telling you you're not trying hard enough to get better, that you don't want to get better, that you're malingering?

I've had to sack professional carers here to help me wash telling me I don't have a real illness, that I just need to go for a nice walk, that I don't want to get better. Can you imagine what that is like? Your article, if any of them read it or the repurcussions form it, will add to that for many of us.


None of this makes sense to me. I am a scientist by training. I don't need the lens of sociology to tell me that the PACE trial was fraudulent. I have decades of my own and my daughter's experience, as well as thousands of others testimony, showing me that for people with post exertional malaise, pushing to try to do more makes us sicker.
Long before I joined online communities I read the PACE trial paper and the newspaper articles saying pwME could recover with a bit of exercise. I saw a feeble set of data with barely any between group differences, and certainly not clinically significant. I knew from experience it didn't make any sense for me.

It was only later I came to understand through analysis of the raw data and learning about the underhand way the data was manipulated, and the conflicts of interest of the leaders of PACE that I came to see the full horror of it. I found the whole saga profoundly shocking. What I had thought of as mere weak data turned out to be much much darker.


You make it sound like a game. I find that disturbing. And still no engagement on the substance of our criticisms.


I read some of it. Like many I left Twitter some time ago when it changed ownership and became a cesspit with algorithms that promote dissent and hate. I fail to understand why anyone with a conscience would still patronise that site. And I can't follow Twitter conversations - they're too disjointed and the posts to short for any in depth discussion.


Give us a chance. I've only just read them. I have for once been blessedly asleep.
Perhaps next time instead of wasting time criticising forum members you will youself engage with us on the subject of your article.


Again, give us a chance. Moderators are sick volunteers, some of us even sleep sometimes.

A little observation. Some members wanting to discuss an article or some science will simply step around posts where someone is letting off steam or expressing discomfort with the topic in colourful ways. In particular, it's probably more productive of useful discussion of a topic if you simply step around those posts that you don't consider useful. Listen to them, learn from them, acknowledge that some people are upset or angry, move on.


Oh for goodness sake listen to yourself. You see cockiness, I see sick people angry and distressed. Don't you think we have a right to be angry at an article that so maligns us, and gets so much wrong? You can walk away for a week and play happy families and go back to your job, doubtless to tell colleagues something unkind about us. We can't. We remain sick. Many of us tied to our beds and now confronted by an article that may, or perhaps has already, make our lives more difficult as we face more misjudgement from those we depend on for survival.


So engage with the substance of our comments and stop maligning us.


But you haven't.
You haven't answered questions about how you came to do a complete about turn after your VICE article. You haven't answered questions about what efforts you made to verify your assumption that thousands have been cured by brain training, all you gave in your article was a few anecdotes and some links to websites with brief recovery stories, at least one of which is advertising by a promoter who makes a living from selling expensive brain training. That's not evidence. You haven't addressed research on brain training that David Tuller and others have pointed to.
You haven't addressed the issue of those who got much sicker with brain training and gradual activation therapies.

So my suggestion, if you return here.

Look at the posts you don't like that criticise you but don't address your article directly, not as signs of obsessive blinkeredness, but as signs that you got something badly wrong and people are hurting.

Then move on and address the comments and questions about your article.

Oh and a final point. You will see from our rules that we don't give permission for forum threads, whether public or members only, to be used as source material for any sort of research. To me this includes any quoting of posts here in your future writings without the individual poster's explicit permission. I trust you will respect this, and have not come here merely to provoke in order to harvest juicy quotes that enable you to further paint us as loony obsessives or worse. I trust you are better than that.

Harvest juicy quotes? My god. We went out of our way to grant retroactive anonymity to anyone who wanted it. When people decided that in fact they wanted to go off the record — when they'd been on — we granted that too. I'm not some kind of monster. In my piece I lay out very, very clearly the immense suffering that can accompany long Covid. (Remember, the piece wasn't even about ME/CFS! But it was about how ME/CFS has, in certain important ways, hijacked the discussion of long Covid.) But making monsters out of those who disagree is another feature of the communities I study.

I'll answer a couple questions, but clearly I'm becoming the kind of interlocutor I hate to be: angry, rude, and dismissive. I don't think this is a good forum for me, unfortunately. Not because I dislike being aggressively challenged. Because I don't like being an asshole, and I seem incapable of not being one when I spend too much time here. For that, I apologize unreservedly.

1. I don't write headlines or subheadlines. Authors of magazine and newspaper articles don't write them. I pushed back hard on both, since they don't accurately represent the content of the article.

2. I changed my mind after writing the VICE piece the same way you all do: I looked at lots of evidence. My conclusion is that in some subset of cases of what gets identified as long Covid — what percent? hard to say for the reasons I lay out in the piece — people's symptoms respond well to gentle exercise and some kind of cognitive work. Remember the woman who went to Yale from the WIRED piece? Lots and lots of people like her. I also found enough people who had been very sick for years, and made partial or full recoveries after using some kind of "mind-body" approach (I hate that term). As I said before, the sheer number of "coincident-with-intervention" recoveries was striking to me. I've studied cancer pseudoscience. I've studied autism pseudoscience. I've studied dietary pseudoscience. These *specific* recoveries — as well as this suite of symptoms — looked different to me. I am extremely skeptical of explaining everything away with spontaneous natural remission or natural fluctuations in the course of the disease. I believe that some % of long Covid sufferers, and perhaps some smaller % of severely sick PAIS sufferers, may actually be addressing the underlying cause of these heterogenous conditions through some feature of these therapies. It is hard to say. I don't know. So I don't say that I know in the piece, and I could very well be proven wrong. Which leads to...

3. I don't think the trials of the Lightning Process or Gupta prove much. I think trialing these kinds of interventions is extremely difficult, as I said before. As I find it personally challenging to engage here — my fault — I can't hang around to keep elaborating on why. I mention why briefly in the WIRED piece. PACE is radioactive in this community, understandably, but I don't think it "proves" anything about these interventions either. But...

4. I also believe it won't matter if an excellent trial comes out. Let's say Donnino (who I talk about in the piece) runs his trial. It's rigorous, and we see a big effect size. Here's my prediction: This community will immediately tear it to shreds. Tuller will tear it to shreds. It simply *can't* be an excellent trial. And the reason for that is what I said earlier, in my post about the unfalsifiable truth around which this community is built. It would be as if someone had discovered conclusive proof that the Book of Mormon was fabricated as a joke by Joseph Smith. That proof would simply be inadmissible in Mormon circles. They would, of epistemological and existential necessity, discover what was wrong with that proof.

Perhaps I'm wrong. I always admit when I get something wrong. If Donnino's trial fails — and I'm guessing we won't find out for at least 6 months — then I will address that publicly. And if it succeeds, I will address that too.

Lastly...

5. I apologize if I have insulted you, or anyone here. That's not my intention. I was doing my best to describe the intellectual and existential dynamics I see at work here. I understand that those dynamics emerge from a place of horrific suffering, dismissal, and disability — as they so often do, understandably. All I can say is that despite persistent misreadings, I am not among the people who think these conditions are "fake," or that they are a "choice." Nowhere have I written that, or suggested that. I took great pains in the piece to make sure people couldn't come away with that impression. In my experience, people unfamiliar with the conditions who read it have told me it opened their eyes to the very real suffering. It did NOT make anyone think anything was fake.

I wish you all well, and if I come back and am able to read responses without finding the worse part of me rising up, I'll do my best to answer in a week or two.

 

[Hoopoe]

But making monsters out of those who disagree is another feature of the communities I study.

Do you consider writing articles and publishing a book merely studying?

One of the features of the BPS community is that they spread harmful narratives about vulnerable people, and exploit them with manipulation and pseudoscientific treatments. The BPS community genuinely feels like a victim when there is even a slight pushback against this.

And the reason for that is what I said earlier, in my post about the unfalsifiable truth around which this community is built.

NICE agreed with the criticism of the PACE trial. NICE also stopped recomming CBT/GET. Was NICE bullied into submission by zealots or was the criticism justified?

You should familiarize yourself better with the topic and try to understand the technical details. There are accepted standards on how to conduct clinical trials and that the PACE trial and the field of psychosomatic medicine has decided to deviate from these standards (and has gotten away with this for far too long).

When Rituximab was tested for ME/CFS, we had an unblinded, inadequately controlled pilot trial of it. The results were very encouraging. But in this field, this kind of study isn't accepted as evidence of effectiveness. A properly blinded and controlled clinical trial is necessary, which was conducted and showed Rituximab does not work.

We patients do not see why psychosomatic medicine should be allowed to set up unblinded, inadequately controlled studies (who frequently also have other problems) and then claim success without ever having demonstrated that the treatment is more than a placebo.

 

[Lou B Lou]

Harvest juicy quotes? My god. We went out of our way to grant retroactive anonymity to anyone who wanted it. When people decided that in fact they wanted to go off the record — when they'd been on — we granted that too. I'm not some kind of monster. In my piece I lay out very, very clearly the immense suffering that can accompany long Covid. (Remember, the piece wasn't even about ME/CFS! But it was about how ME/CFS has, in certain important ways, hijacked the discussion of long Covid.)

But making monsters out of those who disagree is another feature of the communities I study.

"But making monsters out of those who disagree is another feature of the communities I study"

You yourself made a monster (demon) out of a woman in a cafe who simply didn't want to talk to you, wasn't charmed by you.
But that was part of one of your 'ecstatic experiences', so according to you was excusable, was it?

Alan Levinovitz: .... "And there was one other experience of potential narcissism, when I'd gone into this cafe, I was able to charm anyone I wanted during this experience and there was this one woman working at the café behind the counter, and I just couldn't charm her. And she started to look like a demon, for lack of a better word. And I got very scared. I was like, OK, I got to get out of here. Later, I was just like, what the hell? She just didn't want to talk with you. She’s not a demon, it's fine. That's narcissism, thinking that someone who can't be charmed is a demon."

Post in thread 'Wired Magazine: The Painful Truth About Long Covid by Alan Levinovitz, 2026'

Thursday at 2:36 AM

Tern on X posted this about AL and his religious experiences: fire shooting hands, seeing cafe workers as demons and more.

It looks like from his own life and work he's spent so much time in a mindset of miracles and conversion that he genuinely feels like he's had an aha moment with the capacity of the mind and belief to transform. I agree with @dave30th that he really believes in what he says. And it's also the belief & certainty of the zealot or the newly converted.

To be honest I don't think he's really interested in the reality of Long Covid - it's just a puzzle piece that...

• Sparkly Unicorn

• 

 

[Trish]

"The intellectual community here is way ahead of any academic department I have ever worked in"

The hubris is off the charts.

Pot kettle.

No Jonathan Edwards is not the 'beating heart' of this community, all our members are. That's the point of it being a community where all are equal, not a cult with a leader. Though I appreciate very much his willingness to listen, learn and help where he can. Believe it or not I don't always agree with him. We are capable of thinking for ourselves you know.

But making monsters out of those who disagree is another feature of the communities I study.

Oh for goodness sake, listen to yourself. No I don't think you're a monster. I think you are mistaken, and in being so in such a public way are causing harm. It is you who are amplifying our concerns and accusing us of making a monster out of you. And still you don't address any of the points I made about your article.

(Remember, the piece wasn't even about ME/CFS! But it was about how ME/CFS has, in certain important ways, hijacked the discussion of long Covid.)

Could that be perhaps because many people now diagnosed with ME/CFS got it after catching Covid? That's how a lot of ME/CFS often happens - as a sequel to infections.

And what's this nonsense about hijacking. Many of our members have ME/CFS following Covid. We see with some distress many of the same mistakes made for over 30 years being played out again with long covid - the disbelief, the endless repetition of exercise and CBT trials that still show the same negative results if only the BPS cult would open their eyes. We speak up because we see the same old tropes being wheeled out again to the detriment of patients. We have suffered the effects for, in my case 36 years. I don't want to see the same happening to pwLC, including a member of my family.