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

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.

 

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.

 

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.

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.

Yes, I just did that with your comment above.

Stress reduction.

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

 

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.

 

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.

 

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 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.

 

Yes it is.

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?

 

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

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

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.

You’re going to have to be more specific.

 

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.

 

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.

 

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.

 

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

 

How do you define "compatible with bias"?

 

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.

 

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?

 

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

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

 

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.

 

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.

 

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.

 

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.