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

[jnmaciuch]

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

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.

Without that, it’s infinitely harder for someone, especially those in a desperate position, to be able to say “okay, I gave it an honest go, but clearly it’s not true that my illness is caused by psychological state, so I’m going to stop investing money and time into this.”

even if someone comes to that judgement themselves, the entire structure of those viewpoints is to doubt that assessment by the sick person—to view it as “giving up.” You’re going to be facing “wellness experts” and peers that discourage you from trusting your own judgement. I’ve experienced it personally.

and if someone comes into it with an appropriate amount of skepticism, it’s easy to just say that the person obviously didn’t believe it so of course it didn’t work.

It becomes an ideological position where the positive evidence counts but the negative evidence is not considered valid, because clearly if they tried hard enough they wouldn’t be still sick. You can’t open someone’s head and verify whether they really have the beliefs required by BPS-program-of-the-month, so you can always cast doubt on your negative evidence.

Unless there’s a definitive falsifiability condition, it’s absolutely justified to not take the science seriously. And even if you don’t intend harm, you’re putting others in a catch-22 position just by telling them that they need to believe their illness originates psychologically to cure it.

if they believe you but you’re not actually right, you’re just fucking with the person’s head until they come to their senses and get away from you, which may never happen if you’ve been particularly convincing. I’d hardly call that ‘harmless’

[edited for clarity]

 

[Hutan]

It depends on how you define BPS. If you define it as biological, psychological and social factors interacting, and that medical treatment of a person should keep in mind that range of factors, then of course it's impossible to argue against it.

But, the psychosomatic crowd don't use BPS in that way; it's basically used as camouflage, a subterfuge.

Can you tell us some of your favourite studies arising from the psychosomatic paradigm applied to ME/CFS?

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).

Fortunately, it seems that you were not put off from joining the forum after all.

So that we don't take this thread off-topic, perhaps you would like to nominate a "BPS" study or two that you think provide good evidence that brain-training works for ME/CFS, ones that you think got shot down before they were even looked at. We can go to the forum thread for them and discuss the evidence.

 

[Holinger]

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).

That is patently untrue. Bad science gets shot down on this forum. If you think brain training in the format of Alan Gordon, Howard schubiner has any serious science to it then point me to the studies. They are acting like cult leaders that do great harm at present.

 

[Hutan]

If you think brain training in the format of Alan Gordon, Howard schubiner has any serious science to it then point me to the studies.

Here's our thread on a trial on Pain Reprocessing Therapy co-authored by Alan Gordon:
Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain an RCT, 2021, Asher, Gordon et al

That might be a good one to examine with people like @Friendswithme who think Gordon's ideas are useful and @dundrum who thinks that we dismiss BPS ideas without examining them. It would be good to hear both of your thoughts on that thread.

 

[Jonathan Edwards]

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 can understand how it might seem to you @dundrum. But this isn't how the forum works.

I am a professor of medicine and had no real contact with psychological medicine and BPS approaches all my career other than being a bit wary of rheumatology colleagues who were enthusiastic about psychology but never seemed to have any evidence for what they said.

I got interested in ME/CFS because I was asked to advise on immunology. I reviewed the research scene to try to get an idea what the condition was about. I attended a conference at Bristol where Peter Denton White made a presentation designed to show how maliciously anti-scientific patients were to criticise his PACE trial. I was shocked not just that a medic should produce such a manipulative and dishonest presentation but that he should have so little regard for patients that he was happy to present with many of them present. The arrogance and stupidity were mind-blowing.

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. I also see a few good quality studies, many with negative outcomes, but useful ones. In the last five years we have had some very good quality studies that are beginning to produce what may be replicable meaningful positive data.

On the BPS side I just see self-delusion, arrogance, disdain for the patient community and manipulation of the politics in ways that are sometimes probably illegal. The tampering with NICE in 2021 was even more shocking than White. When I say BPS I mean in an ME/CFS context. We are all aware that fear makes you shake and puts your adrenaline up. That is not the issue. The issue is pretending that you have meaningful theories and evidence-based treatments in relation to ME/CFS when it is all scam to make jobs for your friends.

To call this a bullshit crowd may seem extreme but it isn't. As I say, as someone who has worked in medical academia for fifty years I had absolutely no idea just how intellectually dishonest a group of colleagues could be. I didn't start out with this view. I just repeatedly found myself more and more gobsmacked as to how bad the situation was.

The brain retraining idea is completely unfounded. The neurophysiology is entirely bogus, as has become clear to anyone seriously studying the field. Sure, you can find yourself changing your viewpoint but nobody has the faintest idea how that works at a neuronal level. You can spend a million hours searching the literature and you will never actually find a testable mechanistic theory. When I don't work on ME/CFS I work on the physics of the brain so this is very familiar territory.

The bottom line is that there is no bias here. You may think that my perspective is that ME/CFS 'must be physical and not psychological'. But I actually have no commitment to any such point of view. If there was some evidence I would accept a neuropsychiatric basis for at least some cases. What I see very clear evidence of is that the psychological medicine people have not only no idea what they are talking about and no evidence for having valid treatments but have behaved seriously dishonestly. To the extent of trying to get junior researchers dismissed from universities and manipulate public policy. I have been accused of being 'disloyal' to my academic colleagues, but as far as I am concerned my only loyalty was ever to the patients. The idea that it should be to my colleagues pretty much summed up their way of thinking to me.

To take the idea of brain retraining seriously people here need to hear some actual testable theory and to have an account of the methodology that is supposed to deliver the result. We know there are no valid trials but we don't even see any evidence of anything testable. If the people who write popular books had any science behind them we would see the citations of the original research on PubMed. There is nothing I can find of relevance. It may be a shock to find a scam of these proportions right on one's doorstep but it may be easy to forget just how recently all medicine was a scam. maybe it is just that the psychologists have never moved on.

 

[Sasha]

Thanks, @Jonathan Edwards. Never seen such a thorough and solid account of what's wrong with the BPS school when it comes to ME/CFS. I wish we could get Led by Donkeys to project it on the Houses of Parliament.

 

[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.