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

I find it very strange when philosophers and other academics in related disciplines think by talking to a few people and reading some articles of their choosing for a few months, they have expertise on medical matters.

It is clear to me in this case that there is no real expertise here, just opinions shaped by personal prejudices and limited understanding of, and largely rejection of, health related sciences. We've come across this before with at least one other philosopher and countless sociologists, psychologists and psychiatrists.

To me these dabblings in another field are all very well when it only affects academic philosophy, but are far too dangerous to real people's health to be given space in widely read publications like Wired. We are plagued by the likes of Suzanne O'Sullivan adding their misinformed and prejudiced views to 'popular science' literature and spreading pernicious wrong conclusions that cause us harm.

I hope Alan Levinovitz will read the rest of this discussion even if he chooses not to join in any more and will reflect on the real issues that have been raised.

Please, professor, think it possible you are very badly wrong and are causing harm.
If you intend to pursue this line of research, please spend at least an equal time to that you have so far exploring deeply into the harm these brain training programs cause to many sick people. Do some proper research, not dabbling among online anecdotes.
 
CovidSpice said:
@SNT Gatchaman is elite level chill and 100% goals.
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Having met SNT in person a few times now, I can confirm this, productive, without drama. Many people with ME/CFS are wonderful in all sorts of various ways, many of those wonderful people are here. Some people with ME/CFS though are frankly not very nice, some were probably hopelessly but happily unambitious and lazy when well. And still, with all that variation in personality, we have absolutely no good evidence that brain retraining, brainwashing, CBT, any of the 'think better and be well' therapies is of any use to anyone when it comes to curing ME/CFS.


Quoting Long Covid Advocacy's excellent note:
Lou B Lou said:
'This explains A LOT. Levinovitz's new book is called 'Demons by another name: Biology, belief & stories make us sick.
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Lou B Lou said:
It conveniently fits the narrative Levinovitz is building for his book.
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The idea that one can think one's way to health is so damn attractive. And, it is a rather more sophisticated plot device than 'and then he woke up' (edit - as in, 'it had all been a bad dream'). It has the added advantage of making the reader feel safe and comfortable, knowing that they would never fall into such a hole themselves, but, if they did, they would be able to just give themselves a good talking to and be well. It's a comforting morality tale.

And so, here we are, still stuck in people's narrative arcs.
 
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Jonathan Edwards said:
The ethical situation at the time was very straightforward from my perspective as a long term ethics committee participant. A trial on children without a good quality trial having been done in adults first was unethical. The only reason why it might not have been is if there was some compelling reason for thinking that children would respond and not adults. There was no such evidence.
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Esther Crawley's Lightning Process Smile Trial study - the Research Ethics committee question Dr Crawley, accept her justifications for the feasibility study on children, and approve the study, basically just on her opinions. It's depressing how the REC gave Esther Crawley so much leeway:


From the minuted discussion of the Ethics Committee. 'The complainants' include the ME Association and the Young ME Sufferers Trust (the Tymes Trust), also included letters to the REC from patients with experience of Lightning Process or NLP in general).



8. The complainants claim it is not appropriate to research children before work has been conducted in an adult population that can give consent It was felt that respondents had selectively quoted from guidance about the acceptability to undertake research on children. The Committee accepted the researcher‟s view that t CFS/ME is different in children and adults and therefore results from research on adults cannot be extrapolated to children.'


'...... The Committee felt that there may be a slight risk of a child being worse after therapy (but equally a chance of improvement) and considered that they could withdraw at any time from the study if they wanted to. Supervision of the process was in place

10. Service user involvement The Committee were reassured by the fact that AYME had been consulted during the planning of this study.

11. The role of the External Advisory group The Committee considered that AYME has been consulted during the planning of this study.

12. The claims that the LP is coercive and bullying The Committee considered this but were satisfied by the processes and precautions in place in the study..'



Q4: Are there differences in the way children and adults are treated?

Dr Crawley replied that the treatment approaches are very different in the two groups. There are lots of points of difference but given the outcome is so different between adults and children, adult services tended to focus on symptom management whilst paediatric services aimed for recovery. In addition, paediatric services involved families and dealt with education not work. She added that children are already receiving this treatment and that we need to evaluate it to see if it works.'


Q6: The risk balance of the study is not included in the PIS.

Dr Crawley and Professor Gunnell replied that they would be happy to add this to the PIS. They added that according to the figures in the Parliamentary Inquiry into NHS Service provision for ME/CFS, Lightning therapy fares better than the standard NHS therapies of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). It was noted that this information related to treatment in adults. Data for children was not available. They also added that when patients get better they also don‟t tend to take part in surveys.

The Committee asked for these figures to be added to the PIS and to reference them so they are available but to note that they are relative to adults.'



Ethics committee finally approves controversial 'SMILE' pilot study into Lightning Process and children with ME/CFS - The ME Association

In a letter received today, the ME Association was informed […]
meassociation.org.uk meassociation.org.uk




Surely there has been no 'Parliamentary Inquiry into NHS Service provision for ME/CFS'. Are Crawley and Gunnell referring to the Gibson Inquiry 2006? The Gibson Inquiry was a low/no status Inquiry with a committee of parliamentarians. It definitely did not have the status of a Parliamentary Inquiry. Thanks Gibson (sarcasm).
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forestglip said:
Fred Rossi: "The Patient Who Isn’t Supposed to Exist"

"I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward."
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"In August 2023 I started physical therapy with someone who said she worked with post-exertional malaise (PEM) patients. She began each session with ten minutes on a stair-stepper, moved to standing resistance-band work, and finished with time on a treadmill. After the second session my PEM spiked hard. Within a little over a week my doctor told me to stop. This is not an anecdote about a patient who would not exercise. This is graded exercise, administered by someone who claimed to understand the disease, producing exactly the harm the evidence says it produces. I was the willing one. The method was the problem."
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So when the community pushes back, understand what it is pushing back against, because the article blurs the line on purpose, and the blur is where the argument lives.

The community does not reject CBT. ....What it rejects is CBT and graded exercise sold as a cure, premised on the idea that the illness persists because the patient holds a false belief about being sick, and that correcting the belief and pushing through the symptoms will restore function.
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The behavioral model of this illness was built by quietly erasing its defining feature. The original, documented hallmark was an abnormal failure to recover after exertion, the thing now called post-exertional malaise. The model replaced it with ordinary fatigue, and once you make that substitution, “just build up your activity gradually” sounds reasonable. It is not reasonable. It is the precise instruction most likely to injure someone with PEM, because their exertion does not produce tiredness that rest fixes. It produces a crash that arrives a day or two later and can take weeks to climb out of. I know, because a physical therapist who said she specialized in PEM did it to me in two sessions.
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Learningandlistening said:
If we're going to give credence to patients' lived experience of how their illness responds or doesn't respond, then shouldn't we give credence to the lived experiences of patients — like Larson and Lupi in my piece, and thousands of others — who tried tons of things, are very familiar with how their illness responds or does not, and then finally find relief through some BPS intervention? And they're sure it's right because they can feel it? Or do we reserve disdain, skepticism, and disbelief for them, but keep a more open mind to the ones who claim it was LDN, or metformin, or their second craniocervical surgery that led to their recovery?
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Thanks for being here and engaging @Learningandlistening.

As others have pointed out, there is a big difference between believing patients’ accounts of their experiences and accepting patients’ beliefs about causation based on their experience. If A follows B we cannot infer that A caused B. That is why we need well-designed clinical trials.

Similar to you, I used to believe that CBT, GET and other psycho-behavioural interventions probably worked for some people diagnosed with ME/CFS, not only because of the anecdotes but because some were promoted and prescribed by NICE and the NHS. But then I examined the the data from multiple clinical trials and to my surprise I discovered that there is no reliable evidence that any of these interventions work for anybody diagnosed with ME/CFS, however loosely it is defined. So I changed my mind, which is how science is supposed to work.

Contrary to your narrative, vast sums of public money have been spent on numerous trials of psycho-behavioural interventions, and again and again they provide no evidence of efficacy. The notion that trials of such treatments or the voices of their advocates have been suppressed by patient opposition is not only contrary to all the evidence but also insulting to what many of us have experienced as patients – including the deeply unethical but highly effective smear campaign against patients which was orchestrated by the UK Science Media Centre in collaboration with prominent BPS clinicians.

If in the the course of your research you have found anything beyond anecdotes which you consider to be reliable evidence of efficacy of any psycho-behavioural interventions, I’m sure everybody on this forum would be pleased if you could share it.

Finally, another important caveat on anecdotes. Many of these interventions encourage patients to speak positively about their experiences. In some cases patients are even told that they need to tell people they have recovered in order for them to recover. So while it is important to listen to patients’ accounts – particularly when they report harm – we should also be aware of all potential biases when interpreting them.

Hutan said:
The idea that one can think one's way to health is so damn attractive. And, it is a rather more sophisticated plot device than 'and then he woke up'. It has the added advantage of making the reader feel safe and comfortable, knowing that they would never fall into such a hole themselves, but, if they did, they would be able to just give themselves a good talking to and be well. It's a comforting morality tale.
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Yes, The Salt Path is a good example of this.
 
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German physician said:
To make a business out of people and knowingly giving people a promise of healing although they know that they can’t heal, and that they’re actually endangering people, that makes me angry and sad.
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The alternative medicine and wellness industry is enormous and is built mostly on that. Some parts are truly benign, being mostly recreational and centered on relaxation, but creating false hope in the pursuit of extracting money out of people is a long-standing business model. It exists mostly to fill the voids that medicine leaves untouched, and its size is a testament to how much work medicine still has to do. Not coincidentally, a business model that used to very strongly overlap with religion, cults and belief systems in general. Funny how that works.

What is appalling is the merger of health care with it, because it makes it part prescriptive and part gatekeeper. If all of this was adjunct, like it used to be, things physicians shrugged at, saying "hey, if you enjoy it, go ahead, but this is not relevant to me", then it would be mostly fine. It leaves staking one's life on it as a personal choice, one that will usually be discouraged in cases where it becomes dangerous. But it's no longer the case. Now the woo woo that used to be dismissed and ignored is front and center in the practice of health care, alongside medical science, putting them as equal to one another. A massive regression.

All of this is happening through the Trojan horse of psychology. Because all of alternative medicine and wellness woo woo can pass the standards of psychology, and "appear to work", even when they clearly don't. It's the degradation of standards, the enshittification of health care, that makes this whole thing into systemic evil. All under "good intentions", which people doing harm always, and really ALWAYS, think they embody.
 
Lou B Lou said:
He's stuck on the belief (Wessely was all over this) that:

Levinovitz: ..... "If people believe that there is a biological cause, then one important thing that happens is they no longer feel shame or guilt. So they don't feel like it is their own fault. Rather it is their brain or their genetics, or their chemicals. So we believe that in the short term at least, the alleviation of guilt and blame, both from the self and from your community, might play an important role in this.
In the long term however, if you believe there is a biological cause to your condition you may also come to believe that you can't change it..... "
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It's truly amazing how heavy the filters of patient experience work here. They operate in controlled settings in which they can pretty much interpret what they prefer, even if it makes no sense, because they completely overlook the vast majority of circumstances in which this is plainly and obviously false. Like a "naturalist" in a far-away land who never stepped out of his five-star hotel, surrounded by local servants.

I have seen this behavior occasionally in the many thousands of comments and testimonies I have read and heard over the years. It's very rare, and it almost always involves the simple fact that it opens up avenues for treatment, or at least meaningful support. The "hope" is almost never internal, it's about real, material things. Unprompted and unguided affirmation of this "relief" is so rare that if it wasn't so massively over-hyped, I would never have taken notice of it. It's that fringe.

Wessely has built all of his models based entirely on imaginary versions, caricatures, really, of the people he saw. And he really seems to have merely seen them, never actually listened to them. Early in his career he did a lot of rhetorical arguments about how those models are validated based on internal monologues he imagined people must be having in their head. Strongly reminds of most "men writing about women". It's super weird and cringe, but they simply have no way of knowing, and they find a lot of validation in like-minded peers.

It really shows that this ideology was born out of the same cultural tropes that produced "scientific racism", phrenology and other weird superstitions that have been since abandoned.
 
Peter T said:
Some years ago a friend actually advised I try exorcism to treat my ME. I did not follow it up. Did I miss a trick?

If ME and Long Covid are a modern manifestation of demonic possession then is brain retraining the modern incarnation of exorcism.
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Comically, this is basically the business of Scientology. They substituted the demons and spirits part with the ghosts of dead aliens (Thetans), and exorcism into a process of "purging Thetans". All available for a very expensive subscription, very similar to the business model of the "mind-body" scams.

Also very comically, Scientology is fundamentally a psychosomatic ideology. Again the overlap with religion, cults and belief systems is basically ostentatious. It's truly absurd that people who think they are warning about this stuff have become some of its most fanatical peddlers. Humans are so damn freaking weird.
 
For anyone that hasn’t seen it, the PBS documentary Refrigerator Mothers is very affecting and has a number of parallels to ME, from the emptiness of the theory and medical providers’ conviction about its utility to the sexist, racist, and classist assumptions it built on and furthered. You can rent on Vimeo or watch on YouTube — . There’s a scene at 44:25, in link above, that I often think about where a mother talks about the lasting psychic damage she experienced. It’s quite crushing. Very much parallels the irrevocable damage being done to patients and families.
 
forestglip said:
Fred Rossi: "The Patient Who Isn’t Supposed to Exist"

"I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward."
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Good article. Although I'd say that most of us are those patients that shouldn't exist. The entire ideology is built on a set of necessary conditions, all of which have to be met in succession, when the vast majority of us don't meet even half of those, and many of us meet literally none. This is why countless studies of psychosocial traits have only found factors that are only loosely psychosocial: being a woman, being alive (in the sense of being between 0 and 99 years-old), and, uh, having a life, I guess? How does one have "life events" otherwise? That's pretty much it, and half the population already doesn't meet one of those.

As someone who meets not a single one of the many necessary conditions, everything these people say is so damn weird. It's like being one of the few sober people at a party where everyone is utterly smashed. It just all looks completely different without the beer goggles. Or maybe being at a weird spiritual ceremony, with ergot and snake handling, or whatever.

Also, found this:

 
Learningandlistening said:
If we're going to give credence to patients' lived experience of how their illness responds or doesn't respond, then shouldn't we give credence to the lived experiences of patients — like Larson and Lupi in my piece, and thousands of others — who tried tons of things, are very familiar with how their illness responds or does not, and then finally find relief through some BPS intervention? And they're sure it's right because they can feel it? Or do we reserve disdain, skepticism, and disbelief for them, but keep a more open mind to the ones who claim it was LDN, or metformin, or their second craniocervical surgery that led to their recovery?
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Further to my reply above, I would add that on this forum we try to apply the same standards in our analyses of all anecdotes and research, whether it is BPS or biomedical.

The tragedy and scandal is that psychological medicine appears to have been given a free pass to apply much lower standards to research than the minimum threshold permitted in any other branch of medicine.

That BPS interventions can’t be blinded presents difficulties but they are not unique or insurmountable. And we can’t accept uninterpretable evidence from methodologically flawed studies just because the BPS researchers either don’t know how to design trials properly or choose not to in order to make the results fit with their preconceptions.

If you have not already done so, please read Jonathan’s 2021 expert testimony to NICE: https://www.nice.org.uk/guidance/ng206/evidence/appendix-3-expert-testimonies-pdf-333546588760
 
Robert 1973 said:
Yes, The Salt Path is a good example of this.
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My final plea to @Learningandlistening is to please try to prioritise the pursuit of truth and patient welfare over clicks and sales.

There is no doubt that controversy and heated exchanges on social media are an effective form of publicity – whether intentional or not. But please remember that lives are at stake.

If on reflection you feel that you may have got anything wrong – and I would suggest that that the precautionary principle should be applied here – I sincerely hope you will publish a correction and amend any pending publications accordingly.

I would also add that many of us have left X because of its active promotion of division, hatred and misinformation. It puzzles me why so many people who care about truth, decency and humanity continue use the platform. Perhaps they are being unwittingly manipulated by the algorithm. I certainly didn’t realise the effect it was having on me until I left – a bit like escaping from a mind-body cult.

Sorry for multiple posts and apologies if I’m repeating what others have said – I’ve not managed to read all the other posts.
 
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The Application form includes the 'Agreements' a prospective Lightning client has to sign to be accepted onto the Lightning Training. Much of the form is bog standard, manipulative NLP/Coaching questions. But when the questions are applied to sick people, it becomes clear that Phil Parker and the LP Trainers absolutely don't think ME is a biomedical illness at all.

In my view Lightning Process is nothing more than an Obedience Training.
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I suspect that the following is one reason to why @Learningandlistening and others are confused (although not the only reason):

People with ME/CFS and advocates have spent decades arguing against poorly conceived exercise therapies supported by poor research. Because of this they very quickly and firmly dismiss anything that suggests exercise therapy.

For an outsider this dismissal can probably appear like patients show signs of neurotic avoidance and phobia of any form of physical activity.

But I think that it's rare that people with ME/CFS avoid all forms of physical activity. I think most people with ME/CFS try to do a little bit physical activity, as much as they can and that feels good, and that they try to balance the good that physical activity can do for anybody with the bad that it can do in the context of ME/CFS. I also think most people with ME/CFS poke their own energy limits now and then, either because they are forced to or because they want to be more active. I don't think most people with ME/CFS are afraid of this, but are weary from experience that this must be done gently.

I think that it would probably be a good idea for advocates to highlight this more: That a little physical activity is probably a good thing for people with ME/CFS just as for anyone else, if it is within that person's energy limits. That it might help with people's mental health and help to avoid physical injuries. But even so that there is much experience that show that physical activity will not make people recover for ME/CFS.

If advocates were to highlight this more maybe it would be a bit harder for people to come to the wrong conclusions. Maybe it wouldn't convince people like Alan and Garner and rest of the psychosomatism crowd but it maybe would make it harder for them to convince others.
 
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