Wired Magazine: The Painful Truth About Long Covid

[Trish]

At any rate: TLDR — I have spent many, many hours talking with people who were severely ill for years. I have talked with people who are STILL severely ill even after having tried everything. I don't know exactly what's going on. But I don't find the explanations of the hundreds of testimonials especially compelling, and the fact that the cancer/prayer analogy is used to dismiss tells me there's a deep misunderstanding of the difference between these types of testimonials.

OK, so there are hundreds of testimonials of people getting better. I wish them well and am pleased for them that they have recovered. I don't know why they recovered any more than I know who some people recover spontaneously, including 2 in the NIH study and some in the placebo and treatment groups in the rituximab studies and so on, and possibly some on all arms of the PACE trial.

The difference seems to be that those who teach brain retraining seem to include as part of the package of the training course an obligation to publicise your recovery story and attribute it to the training, while the stories of those who don't recover while on the training or who relapse afterwards are missing (not allowed) from the recovery websites.

I don't have the strength to read your article again. Can you clarify whether you gave equal weight in the article to the stories of people who tried brain training and are still very sick, or to those who got sicker?

To be honest I find it disheartening to read such an ill informed article by a professor in a widely read publication, especially now you tell us it fits into your area of study.

I have spent 35 years living with ME/CFS and 28 years as sole carer for my daughter who also has ME/CFS. For the first 12 or so years I was still working part time and raising 2 children as a single parent. I have spent the last 10 years on patient forums, mostly this one in daily discussion of research and sharing experiences. I worked on our Cochrane letters, our NICE submission and our PEM fact sheet.

You say you have spent a year studying ME/CFS and/or Long Covid. You think you understand it and the research picture. You still have an awful lot to learn. Maybe if you stick around, listen and learn with some humility, in a year or so you will write a much better article. You are still on the beginners slopes. Don't drag us down with you. Do better.

 

[Learningandlistening]

I know you know better than this, but accuracy is key here.

They did not «find that it helped them recover». That is their belief, their interpretation of a causal relationship based on observations that are not suitable to determine causal relationships.

Yes, it’s a conviction, not a proven causal relationship.

Yet you seem to be unaware of all of the common mistakes that are also very present in BPS studies.

No, it would not be just noise, it would be glaringly obvious if 5 % extra fully or mostly recovered in the intervention group compared to the control group. We’ve had studies with hundreds of patients that don’t show anything like that. Just by pure chance, wouldn’t you end up with a least one study where you had 10 % or 15 % of those in the intervention group if you do hundreds of studies? Surely that would have showed up by now.

At some point you have to ask yourself how much contra-evidence is enough to be reasonably certain that a hypothesis is wrong. You seemingly keep holding out for that «what if», just like the pseudoscience people do, instead of following the evidence.

You don't really respond to the main points I make in here, about the difference between misattribution in cancer and misattribution with LC and mind-body stuff.

 

[Learningandlistening]

OK, so there are hundreds of testimonials of people getting better. I wish them well and am pleased for them that they have recovered. I don't know why they recovered any more than I know who some people recover spontaneously, including 2 in the NIH study and some in the placebo and treatment groups in the rituximab studies and so on, and possibly some on all arms of the PACE trial.

The difference seems to be that those who teach brain retraining seem to include as part of the package of the training course an obligation to publicise your recovery story and attribute it to the training, while the stories of those who don't recover while on the training or who relapse afterwards are missing (not allowed) from the recovery websites.

I don't have the strength to read your article again. Can you clarify whether you gave equal weight in the article to the stories of people who tried brain training and are still very sick, or to those who got sicker?

To be honest I find it disheartening to read such an ill informed article by a professor in a widely read publication, especially now you tell us it fits into your area of study.

I have spent 35 years living with ME/CFS and 28 years as sole carer for my daughter who also has ME/CFS. For the first 12 or so years I was still working part time and raising 2 children as a single parent. I have spent the last 10 years on patient forums, mostly this one in daily discussion of research and sharing experiences. I worked on our Cochrane letters, our NICE submission and our PEM fact sheet.

You say you have spent a year studying ME/CFS and/or Long Covid. You think you understand it and the research picture. You still have an awful lot to learn. Maybe if you stick around, listen and learn with some humility, in a year or so you will write a much better article. You are still on the beginners slopes. Don't drag us down with you. Do better.

With all due respect, I don't want to engage in dialogue with someone who patronizes me, tells me I am on the beginner's slopes, and to "do better." I have been unfailingly civil, listened, thanked people for welcoming me here, and demonstrated my familiarity with the history, the science, and the issues, as well as broader issues related to pseudoscience, recovery, and sociocultural factors. Disagreement is not evidence of ignorance, despite what you may believe. I will continue to engage with sharp criticisms of my positions. I will not engage with sharp criticisms of my character, nor will I offer such criticisms of others.

 

[Concentric_Spiral]

I mean...much of the article — and many hours of my interviews — were spent describing exactly this. Bedbound, mute, unable to talk or chew. I spoke with a dozen people who had been in such a state, many for years. They, too, are like you all! They, too, tried everything. They, too, did all the intuitive things you have done. They, like you, are not idiots, and read over the research, and even participated in precisely these kinds of discussions, and attacked people like me as harming patients. And then these people — whose experience of their own severe illness is as deep and intimate as anyone's — found that when they tried one of the interventions that they themselves had maligned in the past, or hadn't worked for them, it helped them recover. Because they've spent years on forums like this, and online, they are intimately familiar with spontaneous remission. And relapses. And the stories of people who thought they'd recovered, only to crash months or years later.

But these people are convinced by their own experience of how the intervention worked that none of these things are true. They are convinced the therapy worked for them. My area of expertise is pseudoscientific medicine. Is this like the people who — in possibly the worst and most popular analogy people like to use — attribute their cancer remission to prayer or the Gerson diet or the Zapper?

No. For many, many reasons. First, one's experience of cancer and cancer symptoms isn't like one's experience of ME/CFS symptoms. Second, the *vast* majority of people who claim they have been "miraculously cured" of cancer by a quack intervention are *also* doing regular proven interventions like chemo and surgery. Somehow people who use the cancer analogy seem unaware of this phenomenon. The error in believing one has been healed of cancer by wheatgrass shots is one of misattribution: it was actually the chemo and surgery. (There's lots of reasons people don't want to credit those interventions, but that's a different story.) Cases of spontaneously remitting cancer — like spontaneously remitting ALS — are vanishingly rare, and these days almost impossible to study because everyone with cancer gets treated. In the cases they don't? They die. There aren't thousands of online testimonials of people that eschewed cancer treatment and miraculously recovered, for the simple reason it doesn't happen. The people that opt for wheatgrass and prayer only? They almost invariably die.

With ME/CFS there is no "chemo" or "surgery," so the *only* misattributions that are possible in the cases I've described are: (a) spontaneous remission, which these people are very, very familiar with, having experienced it themselves, or (b) some other unproven "biomedical" protocol.

I don't know what's going on with them. I never claimed to. Nor do I think that "everyone" or even "most" people with severe ME/CFS would benefit from these interventions. But even if it were...I don't know, 5%? That would stil be extraordinary. It would also be noise in a well-powered study, which, as you all know, is hard to even run with severe ME/CFS.

At any rate: TLDR — I have spent many, many hours talking with people who were severely ill for years. I have talked with people who are STILL severely ill even after having tried everything. I don't know exactly what's going on. But I don't find the "they are just remitting" explanations of the hundreds of testimonials especially compelling, and the fact that the cancer/prayer analogy is used to dismiss tells me there's a deep misunderstanding of the difference between these types of testimonials. (And even IF these are ALL spontaneous remissions, the way in which something remits — was it instant, like the Sarno back pain book cure people? did it take a week? a month? — tells us something about what's possibly causing the symptoms biologically.)

Thanks for the lengthy reply. I was referring specifically to how you characterize pacing. Edit: It's almost impossible to 'undershoot' one's energy envelope because one is constantly chafing at it and pushing against it. That's why I was surprised that you were raising that as a real world concern.

 

[Utsikt]

You don't really respond to the main points I make in here, about the difference between misattribution in cancer and misattribution with LC and mind-body stuff.

You’re seemingly assuming that because there are no proven treatments for ME/CFS or LC, it is more likely that people are correct about their interpretations about casual relationships based on anecdotal uncontrolled observations.

I don’t understand how that follows.

We know that spontaneous changes occur in ME/CFS and LC, and they can be drastic. It seems to happen at a much higher rate than for e.g. ALS or cancer, which is probably due to ME/CFS not being caused by damage as far as we know, but in shifts in one or more bistable systems, probably related to immunology and neurology going by both disease dynamics and recent genetic signals.

Which means that the likelihood of a change being «natural» still dwarves the likelihood of it being caused by whatever they did at the time. Especially in a patient group that very often tries things due to the lack of established options, so any positive change is bound to line up with something that you can attribute it to.

This, among other things, is why people question your knowledge, because you bring up arguments that have been discussed and thoroughly disproven here for years, while claiming that you are «extremely» up to speed on all things ME/CFS and LC. If you want to make that claim about yourself, you have to be prepared for people to question it.

 

[Trish]

With all due respect, I don't want to engage in dialogue with someone who patronizes me, tells me I am on the beginner's slopes, and to "do better." I have been unfailingly civil, listened, thanked people for welcoming me here, and demonstrated my familiarity with the history, the science, and the issues, as well as broader issues related to pseudoscience, recovery, and sociocultural factors. Disagreement is not evidence of ignorance, despite what you may believe. I will continue to engage with sharp criticisms of my positions. I will not engage with sharp criticisms of my character, nor will I offer such criticisms of others.

I am not patronising you, I am giving my honest assessment of your knowledge of the subject based on your article. I have not commented on your character, I expect you are a fine upstanding professor who does their best to do good research. I am simply reflecting on the fact that your relative lack of breadth and depth of experience and knowledge shows in the article. Given that you patronised me by suggesting I hadn't read your article, I find it pretty rich you attacking me like this. But so be it. I will disengage from this discussion.

 

[voner]

I understand that for people who are already using all their energy for their basic every day activities, that swap isn't insignificant. But given that lots of people are using their energy in *some* ways that are probably replaceable with this kind of exercise, I think it's probably a good swap.

Otherwise, what will happen is people who are trying to avoid overshooting are statistically likely to end up *undershooting* the envelope. Understandably, but that is a recipe for maintaining a status quo physically and mentally, at best, or very slowly deconditioning, at worst

I find this statement very offensive and evidence that you have much to learn, if you are willing. You really don't understand PEM.

here is a start:

Thread 'Science for ME Fact Sheets'

Mar 26, 2025

The Science for ME committee and members are running a project to develop fact sheets about aspects of ME/CFS. These are being developed in consultation with the forum membership, with the aim of providing information that is both helpful and well based in evidence.

As each fact sheet is completed it will be added to this thread, both in a post and in a printable formatted pdf version. The fact sheets may be copied and used in their complete PDF form, and may be quoted from with acknowledgement of the source.

Each post will include a link to a members only thread to enable members to...

• Science For ME
• fact sheet project resources resources for advocates resources for health professionals
• Replies: 3
• Forum: Fact Sheets

• 

 

[Learningandlistening]

You’re seemingly assuming that because there are no proven treatments for ME/CFS or LC, it is more likely that people are correct about their interpretations about casual relationships based on anecdotal uncontrolled observations.

I don’t understand how that follows.

We know that spontaneous changes occur in ME/CFS and LC, and they can be drastic. It seems to happen at a much higher rate than for e.g. ALS or cancer, which is probably due to ME/CFS not being caused by damage as far as we know, but in shifts in one or more bistable systems, probably related to immunology and neurology going by both disease dynamics and recent genetic signals.

Which means that the likelihood of a change being «natural» still dwarves the likelihood of it being caused by whatever they did at the time. Especially in a patient group that very often tries things due to the lack of established options, so any positive change is bound to line up with something that you can attribute it to.

This, among other things, is why people question your knowledge, because you bring up arguments that have been discussed and thoroughly disproven here for years, while claiming that you are «extremely» up to speed on all things ME/CFS and LC. If you want to make that claim about yourself, you have to be prepared for people to question it.

No. What I'm saying is that these anecdotes of dramatic and often rapid recovery after a unique intervention, whether in the wacko Sarno book for back pain or mind-body for LC, are unlikely to ALL be explained by coincidental and often long-lasting natural remission.

But we don't have to talk about it with mind-body or whatever. As you know, these recoveries happen frequently in case control trials as well, like this one of IVIG: https://www.thelancet.com/article/S1473-3099(26)00063-0/abstract

The IVIG sustained recovery case controls have failed to replicate in double blinded trials. What I'm saying is this: It is more likely that the recovery in the case control trials is due to something related to placebo or the context of a case control trial, than it is to a spontaneous recovery that just happened to come on when the people entered the case control trial (and then lasted for a year! the coincidental natural remission had serious staying power).

The insistence on the explanation of coincidence, or the equally common no-true-Scotsman (well if it responded to that then it wasn't "real" LC or ME/CFS), means that you've created an unfalsifiable view of any such recoveries. All remissions that seem to be in response to a treatment, whether IVIG or mind-body are either (a) coincidental natural remissions, or (b) simply prove the condition wasn't "real" because it is susceptible to placebo.

I believe it is likely that at least some of these "coincidental" remissions are being caused by something like the placebo effect, and the condition is also "real". If that's true, then there's a subset of people with LC whose (sometimes severe) symptoms are responding to something not unlike "mind-body" interventions. Do they cure the condition? Well, no. But in these case control trials they do seem to be very effective. How is that possible, but not in a blinded trial? All kinds of very obvious reasons, which support the points I've made previously. Therapeutic alliance is very different in a case control trial. Plus, it's very, very stressful to be in a placebo-controlled trial, as I'm sure some of you know: You spend the whole time wondering which arm you're in.

And even then! Consider this relatively recent failed trial of monoclonal antibodies, inspired by a *very* successful case control trial.

https://www.sfchronicle.com/health/article/ucsf-monoclonal-antibodies-long-covid-20323832.php

One of the patients in the trial reported recovering so dramatically — in the article — that when it was revealed she was in the placebo arm, she couldn't believe it. Was her subjective experience of remarkable improvement a coincidental natural remission? Or...is it more likely that whatever this particular woman had, it responded to being in the placebo arm of the trial? I believe the latter is far more likely, which tells us something about how that woman might go about trying to control her (real!!) symptoms in the future. Does she represent everyone? No. Might she represent a significant subset of those who identify as having long Covid? Perhaps.

 

[Utsikt]

I understand that for people who are already using all their energy for their basic every day activities, that swap isn't insignificant. But given that lots of people are using their energy in *some* ways that are probably replaceable with this kind of exercise, I think it's probably a good swap.

Otherwise, what will happen is people who are trying to avoid overshooting are statistically likely to end up *undershooting* the envelope. Understandably, but that is a recipe for maintaining a status quo physically and mentally, at best, or very slowly deconditioning, at worst.

Getting back to this: what evidence do you have the ME/CFS is caused by or maintained by deconditioning?

Since you like anecdotes: I have been bedbound for two years. I have lost a lot of muscle mass. I have done the same amount of physical activity every day for at least one year. I’m currently able to as much, or even more than I could do when I first became bedbound.

That is a pretty strong indication that my limitations are not driven by the inherent «capacity» of the muscles or the cardiovascular system, because that’s currently a lot lower than when I started. I suspect most patients will tell you the same.

 

[marshtacky]

I’m pleased to see you engaging here @Learningandlistening.

Trish touched on it a little, but I’m surprised no one has pointed out that there is also suppression of biomedical research and discussion by BPS/mind-body proponents. You mentioned that some online spaces for pwLC remove posts about brain retraining (the ones I’m in typically only remove people promoting brain retraining courses… perhaps you could specify which ones you meant?) but you failed to mention that other online spaces (like R/CFSME I believe and pretty much any forum associated with a brain retraining coach or program ) remove any negative anecdotes about brain retraining, and even things like people saying that they’ve had a serious relapse or discussing biomedical theories. The logic ostensibly being that hearing these things might make people start to think that there might actually be something physically wrong in their bodies and that would make them “ feel unsafe in their nervous system” and perpetuate the symptoms. Much more egregiously, some BPS proponents have called for the media to stop covering long Covid/me/cfs and especially to stop covering biomedical research into its causes and traits— for fear that it may spread these false beliefs and cause more people to become ill (i.e. mass hysteria). and I think some have strongly implied or even outright said that DOING biomedical research should be suppressed— because, on their view, it can only cause harm by making more people think there’s something organically wrong (which accidentally recapitulates the mind-body dualism that they claim to eschew so much, doesn’t it?) I don’t have the energy now to find the exact names and articles, but it’s been discussed on this forum before— perhaps somebody could remember and find the citations?

On another note, you use some studies that suggest that psychological illnesses increase the chance of contracting long Covid, and implied that this suggest a possible psychological etiology. There was recently a thread here about a paper that showed while mental illness increase the risk for LC, It did not increase the risk more than pre-existing physical illnesses. Including that study as a caveat is one of many ways that you could make your article more balanced.

 

[Utsikt]

No. What I'm saying is that these anecdotes of dramatic and often rapid recovery after a unique intervention, whether in the wacko Sarno book for back pain or mind-body for LC, are unlikely to ALL be explained by coincidence. This happens in case control trials as well, like this one: https://www.thelancet.com/article/S1473-3099(26)00063-0/abstract

Based on what statistics? History shows that even most phase two trials fail get past the later phases.

The insistence on the explanation of coincidence, or the equally common no-true-Scotsman (well if it responded to that then it wasn't "real" LC or ME/CFS), means that you've created an unfalsifiable claim.

No, it’s not an unfalsifiable claim. You can falsify the default assumption by doing a controlled trial.

All coincidental remissions that seem to respond to a treatment, whether IVIG or mind-body are either (a) natural, or (b) simply prove the condition wasn't "real" because it is susceptible to placebo.The problem is with (b). I believe it is likely that at least some of these remissions are being caused by something like the placebo effect, and are also real.

The allmighty placebo effect. Very convenient when you want to explain the positive anecdotes of ineffective treatments.

Can you provide any documentation demonstrating that the placebo effect has these vast powers?

One of the patients in the trial reported recovering so dramatically that when it was revealed she was in the placebo arm, she couldn't believe it. Was her subjective experience a coincidental natural remission? Or...is it more likely that whatever this particular woman had, it responded to being in the placebo arm of the trial? I believe the latter is far more likely, which tells us something about how she might go about trying to control her symptoms in the future.

The problem is that when people have tried to test the placebo effect through trials of ineffective treatments like CBT or GET or pacing up, they do not show any benefit beyond passive controls, even when recruiting patients that believe in the interventions. So this argument doesn’t hold up.

 

[Holinger]

Please if you’re having a bad day… Don’t read this.

The reason these articles exist is bc they make better dramatic storytelling than the truth which is a lot less entertaining. It’s awful to read this in 2026.

If only I took this advice my blood pressure would be ok today.

 

[Learningandlistening]

I’m pleased to see you engaging here @Learningandlistening.

Trish touched on it a little, but I’m surprised no one has pointed out that there is also suppression of biomedical research and discussion by BPS/mind-body proponents. You mentioned that some online spaces for pwLC remove posts about brain retraining (the ones I’m in typically only remove people promoting brain retraining courses… perhaps you could specify which ones you meant?) but you failed to mention that other online spaces (like R/CFSME I believe and pretty much any forum associated with a brain retraining coach or program ) remove any negative anecdotes about brain retraining, and even things like people saying that they’ve had a serious relapse or discussing biomedical theories. The logic ostensibly being that hearing these things might make people start to think that there might actually be something physically wrong in their bodies and that would make them “ feel unsafe in their nervous system” and perpetuate the symptoms. Much more egregiously, some BPS proponents have called for the media to stop covering long Covid/me/cfs and especially to stop covering biomedical research into its causes and traits— for fear that it may spread these false beliefs and cause more people to become ill (i.e. mass hysteria). and I think some have strongly implied or even outright said that DOING biomedical research should be suppressed— because, on their view, it can only cause harm by making more people think there’s something organically wrong (which accidentally recapitulates the mind-body dualism that they claim to eschew so much, doesn’t it?) I don’t have the energy now to find the exact names and articles, but it’s been discussed on this forum before— perhaps somebody could remember and find the citations?

On another note, you use some studies that suggest that psychological illnesses increase the chance of contracting long Covid, and implied that this suggest a possible psychological etiology. There was recently a thread here about a paper that showed while mental illness increase the risk for LC, It did not increase the risk more than pre-existing physical illnesses. Including that study as a caveat is one of many ways that you could make your article more balanced.

This is actually a really, really tough issue — the "not talking about things for fear it will cause issues". It's a much longer conversation, and it extends well beyond LC and ME/CFS. I have to bracket it for now, but note I think it is complicated, and often the BPS people are terrible about this.

 

[Utsikt]

Much more egregiously, some BPS proponents have called for the media to stop covering long Covid/me/cfs and especially to stop covering biomedical research into its causes and traits— for fear that it may spread these false beliefs and cause more people to become ill (i.e. mass hysteria).

This is the official stance of the Norwegian Institute of Public Health. Aavitsland frequently accuses researchers and doctors of «fear mongering» when talking about covid.

 

[Utsikt]

This is actually a really, really tough issue — the "not talking about things for fear it will cause issues". It's a much longer conversation, and it extends well beyond LC and ME/CFS. I have to bracket it for now, but note I think it is complicated, and often the BPS people are terrible about this.

Take this as en example:

Morgenbladet retter; Ikke riktig å slå fast at ME-seminar utløste politiberedskap

21. oktober 2022: Morgenbladet publiserer en artikkel med overskriften: «Seminar for ME-forskere krevde vakthold og politiberedskap: – De forsøker å ta oss.». Faksimile: Morgenbladet, 21. okt…

melivet.com

 

[Learningandlistening]

Based on what statistics? History shows that even most phase two trials fail get past the later phases.

No, it’s not an unfalsifiable claim. You can falsify the default assumption by doing a controlled trial.

The allmighty placebo effect. Very convenient when you want to explain the positive anecdotes of ineffective treatments.

Can you provide any documentation demonstrating that the placebo effect has these vast powers?

The problem is that when people have tried to test the placebo effect through trials of ineffective treatments like CBT or GET or pacing up, they do not show any benefit beyond passive controls, even when recruiting patients that believe in the interventions. So this argument doesn’t hold up

I just want to be very clear about this: You are saying that the explanation for every single person who has experienced sustained remission with any intervention that failed a double-blinded trial (so basically all of them), or with mind-body therapies...all of these, because placebos don't work and neither do interventions that fail in trials...all of these people are experiencing coincidental-with-treatment spontaneous long-lasting natural remissions? All of them? So many long-lasting natural coincidental remissions, in all these case control trials, in the placebo arm of blinded trials, in all these anecdotes, but that's what they must be, because no therapy has worked in a blinded trial and placebos don't work either? I mean, this might be the beating heart of our disagreement right here. To me, that position is outlandish. I think the more likely explanation is that at least a subset of people have symptoms that respond well, long-term, to something that was happening with the intervention that sparked their remission/recovery. If we can identify them, then we've got a subset who will respond well to an intervention that exists already. And that is medical progress. Edit: And if the treatment they responded well to is a pharmaceutical that doesn't work in a blinded trial, then we know even more about what they are responding to.

 

[ScoutB]

Much more egregiously, some BPS proponents have called for the media to stop covering long Covid/me/cfs

George Monbiot has written about this.
See: Apparently just by talking about it, I’m super-spreading long Covid

In a presentation to the reinsurance giant Swiss Re, Michael Sharpe, a professor of psychological medicine at the University of Oxford and founder of a long Covid clinic, proposed that one of the causes of the syndrome was “social factors”. The social factor at the top of his list was an article I wrote for the Guardian, describing the suffering of patients with the condition.

 

[EndME]

No. What I'm saying is that these anecdotes of dramatic and often rapid recovery after a unique intervention, whether in the wacko Sarno book for back pain or mind-body for LC, are unlikely to ALL be explained by coincidental and often long-lasting natural remission.

But we don't have to talk about it with mind-body or whatever. As you know, these recoveries happen frequently in case control trials as well, like this one of IVIG: https://www.thelancet.com/article/S1473-3099(26)00063-0/abstract

The IVIG sustained recovery case controls have failed to replicate in double blinded trials. What I'm saying is this: It is more likely that the recovery in the case control trials is due to something related to placebo or the context of a case control trial, than it is to a spontaneous recovery that just happened to come on when the people entered the case control trial (and then lasted for a year! the coincidental natural remission had serious staying power).

The insistence on the explanation of coincidence, or the equally common no-true-Scotsman (well if it responded to that then it wasn't "real" LC or ME/CFS), means that you've created an unfalsifiable view of any such recoveries. All remissions that seem to be in response to a treatment, whether IVIG or mind-body are either (a) coincidental natural remissions, or (b) simply prove the condition wasn't "real" because it is susceptible to placebo.

I believe it is likely that at least some of these "coincidental" remissions are being caused by something like the placebo effect, and the condition is also "real". If that's true, then there's a subset of people with LC whose (sometimes severe) symptoms are responding to something not unlike "mind-body" interventions. Do they cure the condition? Well, no. But in these case control trials they do seem to be very effective. How is that possible, but not in a blinded trial? All kinds of very obvious reasons, which support the points I've made previously. Therapeutic alliance is very different in a case control trial. Plus, it's very, very stressful to be in a placebo-controlled trial, as I'm sure some of you know: You spend the whole time wondering which arm you're in.

And even then! Consider this relatively recent failed trial of monoclonal antibodies, inspired by a *very* successful case control trial.

https://www.sfchronicle.com/health/article/ucsf-monoclonal-antibodies-long-covid-20323832.php

One of the patients in the trial reported recovering so dramatically — in the article — that when it was revealed she was in the placebo arm, she couldn't believe it. Was her subjective experience of remarkable improvement a coincidental natural remission? Or...is it more likely that whatever this particular woman had, it responded to being in the placebo arm of the trial? I believe the latter is far more likely, which tells us something about how that woman might go about trying to control her (real!!) symptoms in the future. Does she represent everyone? No. Might she represent a significant subset of those who identify as having long Covid? Perhaps.

The study you cited is not a case-control study, the mab study was also not a case-control study. Both were case reports. The lack of control is the whole problem! As any statistician will tell you, you will always find case studies where people claim improvements especially when thousands of people get treated with all sorts of interventions even if they bare no relevance. In the case study you cite the person had already undergone multiple multidisciplinary interventions. So the chance of a coincide is even larger. We can safely assume that it is irrelevant as story, just as other such stories tend to be irrelevant.

As an illustrative example: A significant portion of people in the NIH intramural study on ME/CFS later reported being recovered, this was not tied to being part of a clinical trial, it was simply a follow-up. In fact the only intervention as part of the study had no responses. Moreover, the “natural recovery rate” in that study is higher than in most clinical trials, so there is possibly not too much reason to assume that a placebo-like effect leading to remission dominates meaningfully, on the basis of this one small observation. Of course the sample size is far too small to make generalisations, however the observation regarding large effects in trials doesn't seem to be based on any good data and we've got loads of data.

If all of a sudden a large group of people are reporting massive improvements as part of trials then this can indeed be followed be further investigations. If you look at evidence from clinical trials there isn’t that much evidence that a placebo-like effect suggesting full recovery dominates clinical trials in ME/CFS and if you can get the placebo-like effect from anything, there isn’t any reason to particularly involve CBT in the first place. There is not a single BPS trial where they can even gather one shred of meaningful evidence that people become more active as part of the study. That’s how bad the situation is! The true remission rate you talk about is fairly low in trials as far as I’ve seen (albeit being non-zero, in particular in the inital years of illness and even more so in some LC studies) and I've not seen objective evidence to suggest something else, of course improvements are reported more often (including due to various biases).

I do see that there is a coherent argument along the lines of: If people really believe that all of LDN, mestinon, Rituximab, Abililfy, neck surgery, Nattokinase have simultaneous efficacy then they are just saying that none of them have efficacy, but the exactly same argument applies across the BPS spectrum, CBT, GET, submaximal GET, lightning process, Gupta Program, DNRS, Sarno, smelling your own farts to rewire your brain.

Regarding the hypochondriac analogy: Most people growing up nowadays will have once googled something and been told that they have cancer, so much that this became a meme. Did everyone need CBT for this? Of course not, because it has no particularly efficacy here. A friend of mine recently thought he had AIDS after googling something, turns out he doesn’t and is living just fine without CBT or any other forms of divine intervention, others just go scuba diving or “rewire their brain” (because of course nobody can not not “rewire their brain” if the term is used pseudoscientifically, which it always is in BPS spheres). If someone wants to believe there is something effective for "particular hypochrondriacs" then he was to be able to identify those and then run a successful trial, that's just basic medical science. If 30 to 40% of Long-Covid patients benefitted from a certain therapeutic approach that would be extremely easy to show in studies, even if there are some difficulties surrounding running unblinded studies.

 

[Learningandlistening]

The study you cited is not a case-control study, the mab study was also not a case-control study. Both were case reports. The lack of control is the whole problem! As any statistician will tell you, you will always find case studies where people claim improvements especially when thousands of people get treated with all sorts of interventions even if they bare no relevance. In the case study you cite the person had already undergone multiple multidisciplinary interventions. So the chance of a coincide is even larger. We can safely assume that it is irrelevant as story, just as other such stories tend to be irrelevant.

As an illustrative example: A significant portion of people in the NIH intramural study on ME/CFS later reported being recovered, this was not tied to being part of a clinical trial, it was simply a follow-up. In fact the only intervention as part of the study had no responses. Moreover, the “natural recovery rate” in that study is higher than in most clinical trials, so there is possibly not too much reason to assume that a placebo-like effect leading to remission dominates meaningfully, on the basis of this one small observation. Of course the sample size is far too small to make generalisations, however the observation regarding large effects in trials doesn't seem to be based on any good data and we've got loads of data.

If all of a sudden a large group of people are reporting massive improvements as part of trials then this can indeed be followed be further investigations. If you look at evidence from clinical trials there isn’t that much evidence that a placebo-like effect suggesting full recovery dominates clinical trials in ME/CFS and if you can get the placebo-like effect from anything, there isn’t any reason to particularly involve CBT in the first place. There is not a single BPS trial where they can even gather one shred of meaningful evidence that people become more active as part of the study. That’s how bad the situation is! The true remission rate you talk about is fairly low in trials as far as I’ve seen (albeit being non-zero, in particular in the inital years of illness and even more so in some LC studies) and I've not seen objective evidence to suggest something else, of course improvements are reported more often (including due to various biases).

I do see that there is a coherent argument along the lines of: If people really believe that all of LDN, mestinon, Rituximab, Abililfy, neck surgery, Nattokinase have simultaneous efficacy then they are just saying that none of them have efficacy, but the exactly same argument applies across the BPS spectrum, CBT, GET, submaximal GET, lightning process, Gupta Program, DNRS, Sarno, smelling your own farts to rewire your brain.

Regarding the hypochondriac analogy: Most people growing up nowadays will have once googled something and been told that they have cancer, so much that this became a meme. Did everyone need CBT for this? Of course not, because it has no particularly efficacy here. A friend of mine recently thought he had AIDS after googling something, turns out he doesn’t and is living just fine without CBT or any other forms of divine intervention, others just go scuba diving or “rewire their brain” (because of course nobody can not not “rewire their brain” if the term is used pseudoscientifically, which it always is in BPS spheres). If someone wants to believe there is something effective for "particular hypochrondriacs" then he was to be able to identify those and then run a successful trial, that's just basic medical science. If 30 to 40% of Long-Covid patients benefitted from a certain therapeutic approach that would be extremely easy to show in studies, even if there are some difficulties surrounding running unblinded studies.

Sorry, put in the wrong link, lots up on my computer. Yes, a case study. Although there have also been case controls. And yes, of course, that's what I'm saying: if people really believe all of these work, including the BPS ones, then none "work," in the sense that the reason they work isn't the specifics of the pharmaceutical, or the specifics of the intervention. Not sure where the hypochondriac analogy came from? But not me.

My reply above also applies to you:

just want to be very clear about this: You are saying that the explanation for every single person who has experienced sustained remission with any intervention that failed a double-blinded trial (so basically all of them), or with mind-body therapies...all of these, because placebos don't work and neither do interventions that fail in trials...all of these people are experiencing coincidental-with-treatment spontaneous long-lasting natural remissions? All of them? So many long-lasting natural coincidental remissions, in all these case control trials, in the placebo arm of blinded trials, in all these anecdotes, but that's what they must be, because no therapy has worked in a blinded trial and placebos don't work either? I mean, this might be the beating heart of our disagreement right here. To me, that position is outlandish. I think the more likely explanation is that at least a subset of people have symptoms that respond well, long-term, to something that was happening with the intervention that sparked their remission/recovery. If we can identify them, then we've got a subset who will respond well to an intervention that exists already. And that is medical progress. Edit: And if the treatment they responded well to is a pharmaceutical that doesn't work in a blinded trial, then we know even more about what they are responding to.

 

[Concentric_Spiral]

Sorry, put in the wrong link, lots up on my computer. Yes, a case study. Although there have also been case controls. And yes, of course, that's what I'm saying: if people really believe all of these work, including the BPS ones, then none "work," in the sense that the reason they work isn't the specifics of the pharmaceutical, or the specifics of the intervention. Not sure where the hypochondriac analogy came from? But not me.

My reply above also applies to you:

just want to be very clear about this: You are saying that the explanation for every single person who has experienced sustained remission with any intervention that failed a double-blinded trial (so basically all of them), or with mind-body therapies...all of these, because placebos don't work and neither do interventions that fail in trials...all of these people are experiencing coincidental-with-treatment spontaneous long-lasting natural remissions? All of them? So many long-lasting natural coincidental remissions, in all these case control trials, in the placebo arm of blinded trials, in all these anecdotes, but that's what they must be, because no therapy has worked in a blinded trial and placebos don't work either? I mean, this might be the beating heart of our disagreement right here. To me, that position is outlandish. I think the more likely explanation is that at least a subset of people have symptoms that respond well, long-term, to something that was happening with the intervention that sparked their remission/recovery. If we can identify them, then we've got a subset who will respond well to an intervention that exists already. And that is medical progress. Edit: And if the treatment they responded well to is a pharmaceutical that doesn't work in a blinded trial, then we know even more about what they are responding to.

I may not understand this accurately, but if a responsive subgroup exists, why hasn't decades of BPS research been able to identify or reproduce it?