Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

[Andy]

I fell down a "brain retraining" rabbit hole well before my diagnosis and my understanding that over-exertion was harmful for me. The only "useful" aspect of it was as it didn't work, and in fact made things worse for me, it helped convince me that there was something wrong that was outside of my ability to fix.

It also introduced me to a number of people who would loudly proclaim how it had all worked for them and they had been able to fix themselves, yet also complain how bad they felt at the end of the working week - that was also a useful learning experience for me on how desperate people can work hard to convince themselves of something that isn't true, just so long as it is sold to them in the right way.

 

[Trish]

No, I think that is an overgeneralisation that seems to happen quite often here. Every "BPS" study posted here seems to get shot down before even looking at it. (Yes, I know that's an overgeneralisation as well, but that's the impression that I get, and it puts a lot of people off joining the forum, including myself).

I am probably one of the people you are referring to who criticises some studies without reading beyond the abstract. The point your comment misses is that any new thread on a new study is just one part of an ongoing discussion i have been part of for about 10 years. I have become quick at recognising when a researcher is repeating the same unscientific methods we have seen repeatedly, and know cannot provide evidence for their claimed conclusions. Like mixing up statistical association between outcomes on questionnaires and assuming that shows causation when all it shows is an overlap in the questions asked.

I had a look at the first page of that discussion, but the first page was almost entirely ad hominem attacks rather than a discussion of the science.

That's because we have already discussed at great length the hopelessly bad research they base their claims on. Our criticisms don't come from instant prejudice, they come from examination of the basis of their claims.
Why should we hold back from criticising people spreading misinformation? I would do the same with any other anti science group, like anti vaxxers and climate change deniers.

Wilshire et al. reanalysed the PACE trial using the original protocol, and (unsurprisingly) got different results. I didn't see anywhere in their study where they showed the the ideas leading up to the PACE trial were invalid, but if I've missed it, let me know.

The PACE trial itself demonstrated that the ideas it was based on, deconditioning in the case of GET and fear of exercise in the case of their version of CBT, were baseless. If those ideas had been correct, everyone would have recovered. Instead all they managed to show was short term uptick on some subjective outcomes that had been matched by the control groups by long term followup, and no improvement in strength, stamina, or return to work. Even without the Wilshire reanalysis, it was effectively a clear demonstration that ME/CFS is not shown to be due to fear and deconditioning.

 

[Sean]

A non-falsifiable idea of psychological origins of illness, without definitive proof of those psychological origins, is harmful in itself.

the harmful part is when one of those treatments requires acceptance of the belief that one’s illness is psychological in origin without an objective a priori falsifiability condition.

With extremely serious consequences for you whether you accept the diagnosis and treatment or not. Lose-lose.

It is an appallingly cruel Kafkaesque double bind to force a sick person into.

- You are in denial.
- No, I'm not.
- So you admit it?​

Bad science gets shot down on this forum.

So I have seen ten years looking at the BPS side along with the biomedical side and discussing here. What I see of the biomedical side is mostly poor quality studies done with naive enthusiasm, but also stuff that looks to be driven by commercial gain. We pull that stuff apart all the time.

Non-BPS papers get scrutinised by this forum just as closely and robustly as the BPS ones.

 

[Utsikt]

No, I think that is an overgeneralisation that seems to happen quite often here. Every "BPS" study posted here seems to get shot down before even looking at it. (Yes, I know that's an overgeneralisation as well, but that's the impression that I get, and it puts a lot of people off joining the forum, including myself).

I’m sorry, but if you can’t understand why an unblinded study with only subjective outcomes gets shot down immediately, then you really have to do some reading on how scientific methodology works.

In this instance, it’s a complete no-go because it introduces an unknown, but substantial amount of bias through a myriad of mechanisms.

And as NICE (2021) showed, all of the BPS studies had a low or mostly very low quality. Nothing has changed since then.

If they have a low or very low quality, they can safely be dismissed quickly because they are essentially so fatally flawed that they are worthless. And it’s quite easy to spot those flaws from a mile away.

I had a look at the first page of that discussion, but the first page was almost entirely ad hominem attacks rather than a discussion of the science.

Feel free to join the thread and multiquote any ad hominem attacks thar you find.

Btw, the reason people quickly dismiss them is that there’s nothing new in the opinion piece. It’s the same thing they’ve been saying for years, which has been disproven or heavily criticised all along.

I'm not the OP here, but I'll reply anyway. I think we should assume good faith, i.e. assume that everyone posting in this forum is aware of the problems with inappropriate treatment.

That’s not what good faith means. Good faith means to assume that there is a sincere intention to be fair, open, and honest. It does not mean to assume that somebody knows X or Y, or means X or Y regardless of what they say.

And based on what OP has said so far, I’m not convinced they are aware of the harm their recommendations can cause.

Also, it's certainly not true to say that "all BPS-approaches to ME/CFS has caused a great deal of harm to patients". You're using a strawman here.

Okey then, please falsify my claim. Show me a BPS approach you believe can’t cause harm to ME/CFS patients and I’ll explain why I believe it does or can.

If my categorical claim is false, all you have to do is to give me one example.

Again, that’s not what a strawman means. A strawman is to refute a claim that wasn’t actually asserted. That’s not what I did.

The OP was not advocating anything harmful from what I can tell.

Does this mean that you believe that the BPS approaches that OP mentioned can’t cause harm to anyone with ME/CFS? IMO, thats the only way they can’t be harmful, but you might have intended to say something else?

 

[Utsikt]

Non-BPS papers get scrutinised by this forum just as closely and robustly as the BPS ones.

@dundrum @Friendswithme
Here’s a recent example:
https://www.s4me.info/threads/physi...duals-with-me-cfs-2025-broadbent.43481/page-2

 

[Jonathan Edwards]

Or this one:
https://www.s4me.info/threads/osteo...-signaling-2025-yang-et-al.43452/#post-598961

The first comment is from me
"I find it hard to believe that any of this is real"

 

[Jonathan Edwards]

I also think it is iworth reflecting on the fact that this same BPS community has been responsible for deceiving the ME/CFS community over the Cochrane exercise review. Even their 'independent' go-between, Hilda Bastion, has made it clear that she consider their behaviour appalling. This is what this community really thinks of patients - that they can be either brainwashed or bludgeoned into accepting the BPS drivel as good for them.

And of course we have had a rehabilitationist on the forum insulting the whole community in quite extraordinarily language when their research project was criticised.

Human nature is complicated. These people are supposed to be experts in human irrational or devious thinking and yet they seem to be the most irrational and devious of us all.

 

[Kitty]

No, I think that is an overgeneralisation that seems to happen quite often here. Every "BPS" study posted here seems to get shot down before even looking at it. (Yes, I know that's an overgeneralisation as well, but that's the impression that I get, and it puts a lot of people off joining the forum, including myself).

Thing is, if someone asks a question here—e.g. "Does it put a lot of people off joining the forum?"— they'll get a discussion.

If someone makes an assertion—e.g. "It puts a lot of people off joining the forum"—they'll be asked for their evidence.

Researchers make assertions like this all the time. If we considered them all in detail, regardless of whether good evidence was supplied, we'd be at it till Kingdom Come.

We intend to make progress, so we need to filter information. Biopsychosocial researchers have spent 40 years on ME/CFS but haven't even grasped the notion of objective evidence yet; why would we regard them as a promising source?

 

[rvallee]

Research papers - there are no RCT's testing this out.

There are actually lots of clinical trials of this, easily hundreds (CBT is very much the same idea). Not controlled, because it's not feasible. None are rigorous. All of them heavily biased and of very poor methodology (as otherwise they know it will be negative). There will never be a large rigorous trial of this for this very reason. This was the promise behind PACE. It wasn't rigorous, in fact they literally had to fudge numbers to turn a negative into a weak positive.

This has been ongoing for decades. Still hasn't shown any evidence for anything. It's actually a big tell that ideologues maintain the fiction that this hasn't been tested, when it's literally been the standard treatment paradigms for several decades now.

You have followed the pop psychology rabbit hole. You might want to check the underlying research, as we have. There's a lot of it. All of it is bad, but the idea that this hasn't been tested is absurdly wrong. In fact it's entirely on the basis of those flawed trials, which never confirm any of it, that those ideas have been marketed, despite there being no evidence of efficacy, and certainly no scientific evidence or even a theoretical model (a hypothetical model is not a theoretical model, it lacks exactly what makes a theoretical model valid: evidence).

 

[EndME]

No, I think that is an overgeneralisation that seems to happen quite often here. Every "BPS" study posted here seems to get shot down before even looking at it. (Yes, I know that's an overgeneralisation as well, but that's the impression that I get, and it puts a lot of people off joining the forum, including myself).

Thank you for joining S4ME @dundrum. I think if you are able to spend more time on this forum, you will find that all research of low quality will be criticised irrespective of who the authors are or what the field of research is. You will also find that based on discussions happening on S4ME papers are published that criticise certain biomedical studies and their conclusions. There are also very detailed blog posts written by @ME/CFS Skeptic (which can be found at https://mecfsskeptic.com/) that methodologically analyse and often critique studies on ME/CFS in all realms, biomedical, psychiatric and psychological.

Most members are very quick to point out that much of the biomedical research is of very low quality and does not contribute to anything meaningful, so much that you can even find threads titled as Bio BS is worse than BPS--change my mind/prove me wrong. On the top of my head I can only think of 1 occasion where people hadn't pointed out serious flaws in biomedical studies that had gained traction on S4ME and that didn't have null results (the most studies in ME/CFS of high quality of course tend to have null results). Of course some biomedical studies don't get much discussion on S4ME, but that tends to be as they as are instantly thought of as irrelevant, which is perhaps even worse than receiving a detailed critique.

I can see why you would find that every "BPS" study on ME/CFS gets shut down before looking at it closer. In my opinion that is largely because the flaws in these studies tend to be so apparent for anybody that has previously spent more time dissecting the studies more methodologically, that a rigorous assessment tends to usually not be needed. Is there a single BPS study for ME/CFS that you think provided meaningful insights that was shut down before being rigorously assessed and as such was wrongfully dismissed? If such a study exists please share it, if multiple exist even better!

 

[rvallee]

We have sufficient evidence to say for certain that physiology can affect psychology (e.g. sickness behaviour), and that psychology can affect physiology (e.g. stress hormones which affect the immune system).

The Sun and the Moon affect all life on Earth. Literally all of it derives from those astral bodies. That doesn't make astrology correct. This is not how science works. This is not how anything works. Something that can be imagined as plausible doesn't actually make it scientifically plausible.

 

[Utsikt]

We have sufficient evidence to say for certain that physiology can affect psychology (e.g. sickness behaviour), and that psychology can affect physiology (e.g. stress hormones which affect the immune system).

The Sun and the Moon affect all life on Earth. Literally all of it derives from those astral bodies. That doesn't make astrology correct. This is not how science works. This is not how anything works. Something that can be imagined as plausible doesn't actually make it scientifically plausible.

Crosspost multiquote doesn’t work for me atm, but this was my response in this thread:

If thoughts can affect any part of the body in any way, then I should be able to make myself turn green without any external interventions.

If you tell me that’s impossible, I challenge you to define what is possible and not.

You should quickly come to the realisation that there are physical limits to what the CNS actually can and can’t make happen.

This was meant as a thought experiment, not as me saying that someone actually believes that thoughts can do anything.

 

[dundrum]

The Sun and the Moon affect all life on Earth. Literally all of it derives from those astral bodies. That doesn't make astrology correct. This is not how science works. This is not how anything works. Something that can be imagined as plausible doesn't actually make it scientifically plausible.

I don't think anyone was claiming that something ridiculous was possible. You seem to be using a strawman here.

 

[Utsikt]

I don't think anyone was claiming that something ridiculous was possible. You seem to be using a strawman here.

I believe it was meant as an analogy.

You said that we have evidence that ‘physiology can affect psychology, and that psychology can affect physiology’.

@rvallee response essentially said that saying that A can affect B, and B can affect A doesn’t mean anything unless you consider the specific mechanisms through which they affect each other. This is what BPS theories usually fail to do.

 

[Utsikt]

Yes, there are very many, and that is one of the reasons I've avoided joining s4me until now. The other reason are all the personal attacks, usually in the aforementioned threads. I just had a look through the psychosomatic research forum, and here are some examples:

Would you mind making comments in the threads you mention to point out any behaviour you feel is unfair or any factual mistakes in the criticism of the content?

You’ve still only said ‘I don’t like how you treated these’ but not given any actual examples.

 

[dundrum]

Biopsychosocial researchers have spent 40 years on ME/CFS but haven't even grasped the notion of objective evidence yet; why would we regard them as a promising source?

Well, that's simply not true, and is a classic example of why people avoid joining this forum, including myself. There are many biopsychosocial studies with objective outcomes, e.g. grey matter, cortisol awakening response, autonomic response. The problem is that these aren't really biomarkers for ME/CFS. There is a lot of talk on s4me about using walking distance as an objective marker, but the problem is that walking distance isn't a biomarker of the illness either. Mild patients (who are the ones in these studies) are not likely to show any difference in walking distance when they recover.

The reality is that at the moment, self-reported outcomes are the only measure of the illness. That doesn't mean that self-reported outcomes are useless though. There are things that can be done to reduce bias, such as having an attention control, and having long-term follow-up. It may also be possible to have a trial on bedbound patients, as they are likely to show increased activity.

 

[dundrum]

I’m sorry, but if you can’t understand why an unblinded study with only subjective outcomes gets shot down immediately, then you really have to do some reading on how scientific methodology works.

There you go assuming bad faith. I'm very familiar with how scientific methodology works, but you've poisoned the well before we've even started discussing specifics, so it's pointless going further. That's exactly the problem that I see all the time on s4me, and people aren't going to join while this happens. This isn't how scientific discussion works.

In this instance, it’s a complete no-go because it introduces an unknown, but substantial amount of bias through a myriad of mechanisms.

And as NICE (2021) showed, all of the BPS studies had a low or mostly very low quality. Nothing has changed since then.
If they have a low or very low quality, they can safely be dismissed quickly because they are essentially so fatally flawed that they are worthless. And it’s quite easy to spot those flaws from a mile away.

You might want to look into that more. Those studies were downgraded due to indirectness, not due to the quality of the studies themselves. There is a difference.

Feel free to join the thread and multiquote any ad hominem attacks thar you find.

Yes, I just did that with your comment above.

Okey then, please falsify my claim. Show me a BPS approach you believe can’t cause harm to ME/CFS patients and I’ll explain why I believe it does or can.

Stress reduction.

Again, that’s not what a strawman means. A strawman is to refute a claim that wasn’t actually asserted. That’s not what I did.

Ok, perhaps you can give the correct term for your bad faith comment. I'm at a loss.

 

[Utsikt]

There is a lot of talk on s4me about using walking distance as an objective marker, but the problem is that walking distance isn't a biomarker of the illness either. Mild patients (who are the ones in these studies) are not likely to show any difference in walking distance when they recover.

Nobody has ever claimed that the 6MWT or any other walk tests are biomarkers of an illness. It is an outcome measure that can be used under certain circumstances.

It is also false that mild people would not improve in the 6MWT. Mild pwME are substantially less active than their healthy equivalent (which indirectly causes deconditioning) and we also know from other illnesses that people that respond positively exercise or activity shows quite large improvements in 6MWT.

 

[Jonathan Edwards]

Well, that's simply not true, and is a classic example of why people avoid joining this forum, including myself.

I am afraid it is entirely true. I have talked to these people and they do not understand. It is not a question of whether there are objective outcomes - as you say, there are, but often they don't tell us what we want to know. The problem is that BPS researcher more or less uniformly do not understand the need for objectives outcome measures in open label treatment trials. Simon Wessely does not understand - he told me in an email. About fifty of them signed a letter to a journal indicating that none of them understood.

Self-reported outcomes are not the only measures. Things like return to work or detailed actimetry would provide robust measures if treatments actually did anything worthwhile. Self-reported outcomes are essentially useless in open label trials. I agree that there are things that can be done to reduce bias button the only trial we have that begins to look as if it shows a meaningful effect everything possible was done by the investigators to maximise bias. Objectives measures were withdrawn. Patients were sent newsletters telling them which was supposed to be the best treatment, and so on.

 

[dundrum]

I am probably one of the people you are referring to who criticises some studies without reading beyond the abstract. The point your comment misses is that any new thread on a new study is just one part of an ongoing discussion i have been part of for about 10 years. I have become quick at recognising when a researcher is repeating the same unscientific methods we have seen repeatedly, and know cannot provide evidence for their claimed conclusions. Like mixing up statistical association between outcomes on questionnaires and assuming that shows causation when all it shows is an overlap in the questions asked.

That's because we have already discussed at great length the hopelessly bad research they base their claims on. Our criticisms don't come from instant prejudice, they come from examination of the basis of their claims.
Why should we hold back from criticising people spreading misinformation? I would do the same with any other anti science group, like anti vaxxers and climate change deniers.

Well, I think that's a problem. What I see is a lot of misinformation about biopsychosocial being continually spread here. Then, those misunderstandings lead to personal attacks and unfairly panning studies before even looking at them.

The PACE trial itself demonstrated that the ideas it was based on, deconditioning in the case of GET and fear of exercise in the case of their version of CBT, were baseless. If those ideas had been correct, everyone would have recovered. Instead all they managed to show was short term uptick on some subjective outcomes that had been matched by the control groups by long term followup, and no improvement in strength, stamina, or return to work. Even without the Wilshire reanalysis, it was effectively a clear demonstration that ME/CFS is not shown to be due to fear and deconditioning.

The PACE trial is an interesting example. Clearly many patients (bedbound) are severely deconditioned, and clearly many patients also do have weird and wondering bogus ideas about their illness (thinking about the debunked mito test, microclots, etc), and many patients clearly do have an excessive fear of activity (believing that they can't do any exercise as their mitochondria are broken, or their connective tissue is falling apart). But it's also pretty obvious to everyone here that those don't apply universally to all patients. So the outcome of the PACE trial is probably exactly what we would predict based on what we know about the illness.