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

Not quite.
Patients who have been exposed to brain retraining have recovered.
The causal link needs demonstration in a controlled fashion.
People exposed to homeopathy recover from things.

The history of these sorts of treatments is that they never get validated - probably because they have no specific efficacy. And the recent history of non-pharmacological treatments for ME/CFS is of trials failing to demonstrate any major benefit if at all.

In addition, a lot of these people dying report having been made worse by such treatments.

Further, if brain retraining is supposed to work by suddenly getting someone who has been protecting themselves from activity for a bit longer than necessary to be more active then what is to say that they didn't get better in the end because they had protected themselves for such a long time. Brain retraining surely presumes a prior period of protecting. So maybe that is what does the trick?

 

No, it had a statistically significant reduction in self-reports of fatigue, but not in self-reports of physical function, and the reduction in self-reports of fatigue wasn't maintained at follow-up.

I genuinely don't know why you continue to treat subjective measures in open-label trials as though they are measuring the things you wish they were. I would love to understand.

 

They aren't biomarkers but ME/CFS is significantly disabling and so activity levels would be expected to be a reasonable proxy. The NHS classes 'mild' ME/CFS as follows: 'You’re able to care for yourself but may have problems moving around; you may be able to go to work or school, but will not have energy to do much else.' So even at the mildest level where you're just sick enough to be diagnosed, I would expect to see differences in step counts, for instance.

But do we know that it's 'mild' patients who tend to go into trials? On the one hand, you'd have to be well enough to deal with the trial, but on the other hand, maybe you'd have to be sick enough to be motivated to take part in the first place.

And in at least some trials, you're not allowed to be in the trials if you're only mildly affected. In PACE, they specified that study participants had to score 65 or less on the SF-36 at baseline, while the norm is >90 (see the Wilshire et al. PACE 'recovery' critique).

 

To this point, I definitely saw a big increase in my steps when I found a supplement that really worked for me, even though I was mild before that. I practically jumped at the chance to take long walks every day for the first time in years.

Another person I know who got a huge boost from the same supplement got up to cook for the first time in months despite being mostly bedbound previously.

When something actually works for a person with ME, it tends to be extremely obvious that it works from their sudden change in activity, regardless of their baseline severity.

 

Glad you said it before I did - as I’d be reporting myself that it’s because of the psychology background and the shame and embarrassment poor behaviour and thinking brings on the proper scientific subject that bad propaganda charading as research and claiming to be acceptable as scientific psychology needs to be called out.

Interesting to see what we are up against re how some people’s thinking patterns get stuck by belief systems and how dangerous it is /must be if patients are stuck near them as they can’t see or hear anything that doesn’t correspond to old fashioned outdated beliefs systems/bigotry .

I feel like I have my answer in the old wine new bottles even down to the arrows trying to be thrown it’s clear ‘brain training’ is a thinly veiled rebrand for those with the same old ideas on certain people to hide and pretend they are modern to themselves.

it’s worth us remembering with these sheets that this is a sad norm most/many are up against in their daily interactions and how explicit we do need to be therefore on the flaws of it and harms etc.

I can see it’s a painful process for those who don’t want to change because the status quo has suited them well whether it’s true harmful or factually incorrect and uncalled for with devastating attacks on identity created by the lack of responsibility or acknowledgment of what they are knowingly doing deliberately not differentiating. I certainly feel let’s be honest this is just trying to double-down on the horrific 2007 fear-avoidance debunked harmful guidelines that caused a dystopia

I think technically calling the bps a model is inaccurate

At the time was being pushed and invented by eg Wessley in the form it was - writing down a bigotry and the drawing a big circle and just lumping some ambiguous terms in the middle - it absolutely’stood out’ as breaking with any norm of standard of a psychology model ie done so as to be testable

this was the discussion and what should have been picked up on by any competent person in psychology around the early 2000s . so in a sense it presented an attack on psychology as a subject and as a professions/sciencd trying to set up and do things the right way being undermined - I find it shocking people handed over letting them use their terms (like CBT and model,which needs to recreate/was about getting proper data early on to check things weren’t based on film glam or bigotry then continuing based on fake claims)


so it isn’t actually proper psychology either - and given a circle on paper isn’t a testable if falsifiable model calling it a model and giving it that fake privilege when it never met that is part of the problem/smoke and mirrors

it never met any basics

the closest it comes to as what the bps thing for cfs is/was is a marketing slogan and a propaganda plan.


Weirdly for me these two areas happen to be my background of studies and experience so I say this technically and factually

 

This.

The huge weight they've been carrying has eased, and they're away.

And the idea that people wouldn't notice this is absurd. As soon as a severely ill patient needed to turn over in bed, or a moderately ill patient needed to stand up, they'd feel the marked difference in their muscle function. It's like the broadband's come back on again after being forced to rely on a faltering mobile connection.

 

That’s incorrect

actually scientific psychology was set up to make the area above board and some bits despite being ‘parapsychology’ in the quality of their method and critical thinking are under that subject in order that scientific psychology tests them to define what is evidenced or not

bps and psychoanalysis before it have historically been well known to have this problem of wanting to shake off the basic standards that would make it not ‘para’ and indeed put it in the safety tested reliably enough to distinguish it from astrology or spoon bending - despite being given the roadmap and choice. It’s actually on ongoing ‘debates and themes’ thing in scientific psychology that most students will touch upon in some form


So the faux outrage and pretending it’s a patient think for whatever benefit that conveys in argument based on sophism (picking out quotes of claims or inferences from a papers abstract and sales spiel part without checking if it’s a valid methodology) or that said inferences can even be made from the results rather than scientific argument (analyzing which papers aren’t fraud and what limitations each have so you see what can be taken reliably from what and actually applies to what population accurately - by looking at the results and method)

it is true that you don’t want to meet the bars of claims that would put these claims or this area into science but somehow feel you are different to those other areas that also use para methods and ‘models’ (aren’t properly testable just ‘show testing’)

can you confirm how the testing standards and regs the bps stuff for cfs claims have been based on has been different to eg astrology regarding the model being made testable at each point (before bps all models were top down and had specific defined cause—> testable outcome, not just a big circle you can’t test so it can never get past correlations of associations in claims)

before you get into throwing such accusations of @rvallee being rude and other suggestions just for pointing out where it sits grouping wise with regard to rigor of testing/test ability of the belief system?

 

Statistical significance is irrelevant in the absence of clinical significance.

Which can be solved by helping feeding the patients and/or tube feeding.

You’re implying causation again when there is none.

Which aspects? And helpful in what way?

How many times does someone have to ask you to be specific before you do it without being prompted?

Not doing something like an unproven treatment can be a better alternative than doing the treatment. Do you agree?

And nobody has given up on researching the causes of ME/CFS and potential treatments. Where on earth did you get that impression from? Is it just because your pet theories are not considered viable?

I had a long list of markers and all you say is that one of them might not show a difference for a subgroup of patients?

And I never claimed they are markers for ME/CFS. They are proxies. I thought that was rather obvious, especially when I specifically stated that they are not perfect.

 

Why is that?

My intuition agrees, but I struggle to express why atm.

 

I've been thinking how useful it would have been during all this to have had a factsheet on why BPS trials produce results that can't be trusted, and that explicitly tackles the profoundly illogical things that proponents say to defend those results (such as 'You can't do unbiased trials therefore you have to trust the results').

We could have saved ourselves the time and energy of producing what has now probably been tens of thousands of words explaining the issues and just pointed to the factsheet instead.

It continues to astonish me that no such paper appears to exist in the literature.