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

And shed a little light on how health professionals really think:
"The bastards don't want to get better".
For anyone who is not familiar, these immortal words were how a supervisor of the nurses who delivered the treatments in the FINE trial characterised the nurses' attitude to the patients at times:
There have been one or two times where I have been worried because they have got angry at the patients...that anger has been communicated to the patients. Their frustration has reached the point where they sort of boiled over... there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know, “The bastards don’t want to get better”...I think it’s a difficult thing for all therapists and I think basically over the time you just basically learn to cope with it, and but they have not had time.’ (Supervisor)

It appears in this paper:
https://pmc.ncbi.nlm.nih.gov/articles/PMC3259041/
Peters S, Wearden A, Morriss R, Dowrick CF, Lovell K, Brooks J, Cahill G, Chew-Graham C; FINE Trial Group. Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of chronic fatigue syndrome/myalgic encephalitis. Implement Sci. 2011 Dec 22;6:132. doi: 10.1186/1748-5908-6-132. PMID: 22192566; PMCID: PMC3259041.

The FINE trial itself is here:
https://pmc.ncbi.nlm.nih.gov/articles/PMC2859122/
Wearden AJ, Dowrick C, Chew-Graham C, Bentall RP, Morriss RK, Peters S, Riste L, Richardson G, Lovell K, Dunn G; Fatigue Intervention by Nurses Evaluation (FINE) trial writing group and the FINE trial group. Nurse led, home based self help treatment for patients in primary care with chronic fatigue syndrome: randomised controlled trial. BMJ. 2010 Apr 23;340:c1777. doi: 10.1136/bmj.c1777. PMID: 20418251; PMCID: PMC2859122.
 
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The lead investigator of FINE was telling people that ME or CFS was like really bad jet lag. Since that's how those providing the care were essentially indoctrinated, I have some sympathy for some of their frustration at not seeing people improve.
I disagree on the sympathy point, but it’s only a matter of personal opinion.

There is no sympathy to be had for claiming that the patients did not want to improve. If they said ‘the bastards don’t improve’, I might have had some sympathy with them because it’s tough to watch suffering and not being able to help.

They should have know better than to listen to the investigator against the evidence to the contrary from their experiences with the patients.

Decent people have been indoctrinated before, and done far worse things. So I understand how it could happen, but they do not get my sympathy.
 
I disagree on the sympathy point, but it’s only a matter of personal opinion.

I expressed sympathy for their frustration, not for their manner of expressing it. But I've certainly said things I wish I could un-say, that I meant in the heat of the moment but didn't mean in the larger sense or upon reflection and after internal debate with the better parts of my nature.
 
we had a rehab trial for severe patients, or at least homebound ones, called FINE. The PACE team kept touting it as their "sister trial"--but the PACE papers didn't mention it. It published null results for its subjective outcomes in 2010, a year before PACE--so PACE disappeared it, even though it had been billed as PACE's "sister trial." If that does not represent bad faith and constitute a form of research misconduct, I'm not sure what does.

Yes, good point. It had a statistically significant reduction in fatigue, but not physical function, and it wasn't maintained at follow-up.

I'm not sure how they "disappeared" it, if it was published in the BMJ:

https://www.bmj.com/content/bmj/340/bmj.c1777.full.pdf

It seems ridiculous to call that "research misconduct", when they published the results.
 
Well, I wouldn't suggest severe patients go near a rehab trial until we have
(a) rehab being trialled that is significantly different from what has gone before,
(b) evidence from trials with multiple objective primary outcome measures that mild and moderate patients benefit (between-group differences, not within-group differences), and
(c) evidence that benefit lasts.
We do not have any of those. For those with mild and moderate ME/CFS, there are lots of other more objective measures like hours in work/education, or various tests physios use like how many sit-to-stands you can do in 30 seconds, but none as good as the forced expiratory volume test in asthma, because we don't understand the pathophysiology yet.

Well the problem we have is [1] patients are dying from malnutrition and [2] patients are recovering from doing things like "brain retraining". So I don't think it's good to just do nothing. There are many aspects of these therapies that aren't problematic, and which seem to help patients. So what is wrong with either testing those, or offering patients advice? Surely death or permanent disability isn't the desired outcome here. Giving up and doing nothing until someone finds a biomarker or similar doesn't seem useful either. If it is a functional issue in the brain, it's likely going to take another few decades to show that definitively.
 
It had a statistically significant reduction in fatigue

I have called it "research misconduct" on the part of the PACE authors for them to completely "disappear" the FINE findings by not mentioning them in their own papers after years of promoting htem a PACE's "sister study." And yes, failing to provide an accurate account of the background in your intro and for assessing your results is a form of research misconduct. In their protocol, they had actually said don't pay attention to transient changes right after therapy. But then in reporting it, they did. They were pretty minimal improvements in any event.
 
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Off the top of my head:
  • Step counters.
  • Gyroscopic sensors to measure the orientation of the upper body and legs to try to assess orthostatic intolerance.
  • Medication usage for symptom relief.
  • Wages/Hours worked.
  • Sleep measurements.
  • Weekly time spent by carers.
  • Tracking if specific ADL’s are performed or not.

None of these are perfect. But with rigorous methodology and neutral interpretations they might be able to tell us something?

The problem is that these aren't really markers for ME/CFS, and in mild patients (who tend to go into these trials), there may be no difference in step counts or wages.
 
[2] patients are recovering from doing things like "brain retraining"

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?
 
Yes, good point. It had a statistically significant reduction in fatigue, but not physical function, and it wasn't maintained at follow-up.

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.
 
The problem is that these aren't really markers for ME/CFS, and in mild patients (who tend to go into these trials), there may be no difference in step counts or wages.

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).
 
Since the factsheets are supposed to be factsheets and free from beliefs and feelings I think it could be very valuable if you could point out where exactly you got that impression from? Where there specific passages or wordings or is it rather from a more general reading?

The factsheets are factsheets so they are focused on hard evidence. Vague ideas on speculative hypotheses in reference to hardly scientific notions from neuroscience and other ideas won't make the cut. Similarly you should note that there is no reference to biological mechanisms with unsubstantial evidence in the factsheets, prevalence numbers aren't overestimated etc.



I think you might find that a few (though not enough) psychologists/psychatrists are active on S4ME, others have collaborated with psychologists (Brian Hughes to name one) with others being friendly with psychologists/psychatrists and others visiting them regularly.
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
Some examples: no mention of stress as a precipitating factor. Saying that graded exercise has been "not shown to help", then talking about surveys. Similar for CBT. That isn't an accurate portrayal of the evidence.
Which again misses out on the fact that this has been ongoing for several decades, and that many members of this forum have been at it for years. We've seen all this. Many times. This field is built entirely on bad studies, all of which were conducted after the model was invented. They invented the model before they had any evidence.

The IOM/NAM report dismissed most of it as too low quality to interpret. So did NICE. So did IQWIG. And many others. This is the peril of relying on bad evidence: the bad part far outweighs the evidence part.
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
 
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However, are they useful in assessing a subjective outcome, such as depression from asthma?

Why would you argue that. Your claim is that if subjective measures are proved bad for one disease then we should still believe they are ok for other diseases, That doesn't make sense the safer conclusion is to discard them unless proved effective.

What is also interesting is that the more objective measures don't back up the subjective outcomes in ME trials. More suggestion that subjective measures are bad. In fact the more subjective scale (cfq) reported the best results in PACE and the more objective the measures the worse the results got.

I will say the CFQ is a work of complete incompetence and should never be used or trusted.
 
Yes, good point. It had a statistically significant reduction in fatigue, but not physical function, and it wasn't maintained at follow-up.

No it didn't it had a statistically significant reduction in the sum of a set of random questions about fatigue when scored over a unbalanced answer scale across two groups of patients. The notion that the sum of these questions some how represents a good proxy for fatigue is farcical.
 
NICE downgraded the evidence due to indirectness (not requiring PEM). It wasn't due to the quality of the evidence itself.
That’s incorrect
It's frankly insulting and ridiculous to equate psychology with astrology and astrology and Scientology.
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?
 
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Yes, good point. It had a statistically significant reduction in fatigue, but not physical function, and it wasn't maintained at follow-up.
Statistical significance is irrelevant in the absence of clinical significance.
Well the problem we have is [1] patients are dying from malnutrition
Which can be solved by helping feeding the patients and/or tube feeding.
[2] patients are recovering from doing things like "brain retraining".
You’re implying causation again when there is none.
There are many aspects of these therapies that aren't problematic, and which seem to help patients. So what is wrong with either testing those, or offering patients advice?
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?
Surely death or permanent disability isn't the desired outcome here. Giving up and doing nothing until someone finds a biomarker or similar doesn't seem useful either.
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?
The problem is that these aren't really markers for ME/CFS, and in mild patients (who tend to go into these trials), there may be no difference in step counts or wages.
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.
 
@dundrum, your participation on this and other threads has used up a lot of energy of members responding and trying to explain to you the problems with much of the BPS research. Some of the people taking the trouble to do this are very sick, and expending precious energy to try to help you understand. I think in return it is reasonable to ask you to give straight answers to 3 questions.

1. Has this discussion helped you to understand better why trials like PACE are problematic and should not be relied on as evidence that CBT and GET are of any real benefit to pwME?

2. Do you accept the evidence that GET, CBT, LP and brain retraining have harmed many pwME and should therefore be used with extreme caution and only in the context of properly run clinical trials?

3. You say your aim is to help pwME. Do you have any professional and/or financial interest in brain retraining or other therapy for ME/CFS, as a clinician, therapist, trainer, trainee, researcher, podcaster or other related role.
 
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If you look at things like the 6mwt and the step test (which they still haven't published properly)
Yeah, where are the scatter plots? Which are kind of important info. If the plots supported the claims made by the PACE authors then they would have been published in the main paper, or shortly thereafter. The fact that they are still not published 14 years later, and have not been made available for others to analyse, strongly suggests they do not support those claims.

but what people on here care about is whether the statistically significant difference between groups that existed at 52 weeks was maintained at long-term follow-up,
Yep. That form of study is for doing a comparison between groups, not within a group over time.

I agree that subjective outcomes are not ideal and introduce bias. The Wechsler trial is interesting, and does show that subjective outcomes are not useful in assessing asthma.
Nor ME/CFS, as was clearly demonstrated by Fluge and Mella's RCT for Rituximab in ME/CFS, which also used a robust placebo control.

The fact that the thing you’re trying to measure is subjective by nature, doesn’t change the inherent unreliability of the subjective outcome measures. It has to be accounted for, even if it’s the best you’ve got. And there is no law that says that your best is good enough for science. So we have to entertain the possibility that it might not be good enough, period.
This. Has to meet a minimum standard. Has not yet, and is increasingly unlikely to.
 
Yeah, where are the scatter plots? Which are kind of important info. If the plots supported the claims made by the PACE authors then they would have been published in the main paper, or shortly thereafter. The fact that they are still not published 14 years later, and have not been made available for others to analyse, strongly suggests they do not support those claims.


With the step test they published a bar chart with values but they turned down a FoI request from Graham earlier and @JohnTheJack may have got numbers in an FoI. I remember Graham trying to estimate numbers from their plot.
 
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