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

[Jonathan Edwards]

This isn't how scientific discussion works.

Yes it is.

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.

And you should be aware, if you understand the problem, that this was because they had to use an invalid pseudo mathematical system called GRADE. They were not allowed to give the studies zero rating despite therir being valueless because GRADE does not provide the option. You may be aware that I provided Expert Witness Testimony for the Guideline Committee. Have you read that? Is there anything you would disagree with?

 

[Utsikt]

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.

Arguing in ‘bad faith’ means to try to deceive or mislead. I have not done that. I’ve been harsh, which is different.

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.

This only means that there are even more reasons to dismiss the studies as useless.

Yes, I just did that with your comment above.

Apologies if I wasn’t clear. I intended to ask you to join the threads you mentioned and comment there any anything you disagree with.

Stress reduction.

You’re going to have to be more specific.

 

[dundrum]

The brain retraining idea is completely unfounded.

No, that's not true at all. Certainly the "brain training" umbrella includes some dubious shit, but you can't lump it all in the same garbage can. There is valid neuroscience there, in terms of classic conditioning and the neurobiological stress responses.

 

[Jonathan Edwards]

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.

I have lost you there. PACE essentially showed a minimal difference between treatment arms compatible with bias. How does that tells anything at all, other than the treatments do not have useful benefit. The numbers were large so a real benefit should have shown very easily.

 

[dundrum]

And you should be aware, if you understand the problem, that this was because they had to use an invalid pseudo mathematical system called GRADE. They were not allowed to give the studies zero rating despite therir being valueless because GRADE does not provide the option. You may be aware that I provided Expert Witness Testimony for the Guideline Committee. Have you read that? Is there anything you would disagree with?

From what I understand, the indirectness was due to change in the illness criteria (the requirement to have PEM), nothing to do with the quality. Correct me if that is wrong.

 

[Utsikt]

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.

Again, you keep making accusations without providing concrete examples. That’s not how we do things here.

 

[dundrum]

I have lost you there. PACE essentially showed a minimal difference between treatment arms compatible with bias. How does that tells anything at all, other than the treatments do not have useful benefit. The numbers were large so a real benefit should have shown very easily.

How do you define "compatible with bias"?

 

[jnmaciuch]

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.

None of that changes the fact that it continues to be unethical to encourage people to believe that their illness is the type that is curable by brain retraining when you don’t know for sure that is true.

you’d be asking participants to consent to being gaslit in the fullest sense of the word—to be made to fundamentally doubt their own assessments of their illness and psychological state until such time as they are cured of their illness. If they can never be cured by that method because their illness is the type that isn’t controlled by psychological state, you’ve just put someone through a level of psychological manipulation that we typically ascribe to Stanford prison experiment-type studies.

Even “stress response” therapies aren’t harmless if you’re claiming that successful stress response retraining will cure someone’s illness without absolute certainty that’s true. It’s entirely possible to gaslight someone by claiming that they didn’t manage their stress response well enough because if they did, they wouldn’t be sick anymore. And we know it actually happens from testimony of people who have been through that process.

 

[Jonathan Edwards]

What I see is a lot of misinformation about biopsychosocial being continually spread here.

What exactly is misinformation here?
You are constantly saying people here are being unfair but you have as yet provided any arguments that would make anyone think you have a valid point.

It would be interesting to know why you champion these people? They are incompetent and many behave dishonestly behind the scenes. What's the motivation?

 

[EndME]

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:

https://s4me.info/threads/recovery-is-possible-lessons-in-‘me-cfs’-recovery-from-youtube-goldsmiths.38843/

https://s4me.info/threads/are-cbt-a...or-long-covid-2025-vink-and-vink-niese.43400/

https://s4me.info/threads/risk-fact...ts-and-young-adults-2025-selvakumar-md.42760/

If the same analysis and civility was shown towards these studies on s4me as is shown towards biomedical studies, that would be wonderful. Everyone here, in particular mecfsskeptic, does a great job analysing those studies.

Sorry, I have asked you for an example of a BPS paper into ME/CFS that provided meaningful insights into ME/CFS and you responded with 3 links. One of them is a discussion of a YouTube channel, one of them is a link to a study by member @Mark Vink describing the ineffectivity of CBT in LC with PEM and the last one is a Long-Covid study that contains all of the typical pitfalls, almost all Long-Covid studies have which tend to make their results meaningless, all of which have been discussed in depth on S4ME. Does that mean you cannot come up with a single BPS study on ME/CFS that provided meaningful evidence of a BPS model and that was of a high standard? If not, I can only repeat myself

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?

PS: I agree with you personal attacks are not ok.

 

[dundrum]

Again, you keep making accusations without providing concrete examples. That’s not how we do things here.

Sorry, I don't have time right now to show specific examples. However, from memory, I remember many people saying that psychological stress doesn't affect biology, only the other way round. Jonathan Edwards does correct this misconception, but many posters seem to say otherwise. Also, many posters reject the idea that fear can affect symptoms, that stress affects symptoms, that exercise can be helpful, etc. These misconceptions seem to be common in the ME world.

 

[Jonathan Edwards]

There is valid neuroscience there, in terms of classic conditioning and the neurobiological stress responses.

Where are the experiments to show this 'classical conditioning' in ME/CFS? And the stress response? What is there to link experiments in dogs and monkeys to this illness?
Picking neuroscience concepts off the shelf to suit a popular intuition given fancy names and having no evidence to support it isn't science.

 

[dundrum]

What exactly is misinformation here?
You are constantly saying people here are being unfair but you have as yet provided any arguments that would make anyone think you have a valid point.

It would be interesting to know why you champion these people? They are incompetent and they behave dishonestly behind the scenes all the time. What's the motivation?

I was ask the same: why do you attack them? I've talked to many of these researchers, and I get completely the opposite viewpoint to you. Again: these constant attacks are why researchers aren't interested in joining s4me. That isn't going to change until the atmosphere changes. I won't be sticking around unless I'm able to change the moderation here, although that seems unlikely based on this thread.

 

[dundrum]

Where are the experiments to show this 'classical conditioning' in ME/CFS? And the stress response? What is there to link experiments in dogs and monkeys to this illness?
Picking neuroscience concepts off the shelf to suit a popular intuition given fancy names and having no evidence to support it isn't science.

There are many experiments that look at fear avoidance in ME/CFS, and there are many studies that have looked at stress as a trigger, and the stress response in patients.

 

[jnmaciuch]

Again: these constant attacks are why researchers aren't interested in joining s4me.

You’ve been speaking with multiple researchers on this thread alone.

 

[Utsikt]

Sorry, I don't have time right now to show specific examples. However, from memory, I remember many people saying that psychological stress doesn't affect biology, only the other way round. Jonathan Edwards does correct this misconception, but many posters seem to say otherwise. Also, many posters reject the idea that fear can affect symptoms, that stress affects symptoms, that exercise can be helpful, etc. These misconceptions seem to be common in the ME world.

Now you’re getting into the territory of strawmen.

I have only been on this forum since the start of the year, but I have not seen anyone claim that

1. stress can’t affect biology
   
2. fear can’t affect symptoms

What people have said is that stress or fear doesn’t cause their symptoms. That’s a long way from saying that it can’t possibly affect any aspects of their symptoms.

As for exercise, multiple studies, including PACE, have shown that it doesn’t help. And a large share of ME/CFS patients have tried it themselves and either had no effect or deteriorated, myself included.

 

[Jonathan Edwards]

From what I understand, the indirectness was due to change in the illness criteria (the requirement to have PEM), nothing to do with the quality. Correct me if that is wrong.

It seems you have no real knowledge of the complexity of the analysis. The indirectness argument related to a change in criteria, nothing to do with quality, yes. But if you read what I said I pointed out that this was an irrelevance. They could not downgrade three points for gross risk of bias, which if GRADE was any use they should have been able to.

The point is not what score you get on GRADE. The point is whether or not the trial can be considered reliable. It cannot. As I explain in my Expert Witness Testimony. There is nothing the least bit controversial in that testimony. I tried stout on the assembled Division of Medicine at UCL and everyone in the audience agree that the trials worthless. The problem is that in psychological medicine people are sued to such low standards that they think it is OK. And Simon Wessely wrote a book so that he could say it was sort of OK chaps cos you cannot do any better.

 

[Kitty]

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

I don't understand why this is important enough to repeat. It's fine for people not to want to join the forum if they don't like the way we approach things.

I avoid joining social media groups where opinion is confused with evidence. Which is also fine.

 

[Jonathan Edwards]

How do you define "compatible with bias"?

Compatible with bias. The result was what you would expect from a trial open to major bias from subjective outcome measures on the basis of an open format. In fact the differences are rather pathetic. If the treatment was even acceptable you would probably expect a bigger difference just from expectation bias. As I point out in my NICE testimony the spurious 'benefit' of rituximab in the phase II open label study was way bigger than the difference in PACE. It looks seriously likely that CBT and GET were worse than useless.

 

[Utsikt]

I was ask the same: why do you attack them? I've talked to many of these researchers, and I get completely the opposite viewpoint to you.

So BPS researchers have said to you that they understand the limitations of unblinded studies with subjective outcomes?

Or do you mean that your impression is that they have a good understanding of research methodology?