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

[Trish]

But it didn't. It showed statistically significant improvements for CBT and GET.

Short term statistical significance in subjective questionnaires that was not maintained at followup, not supported by objective evidence and not clinically significant and in an unblinded trial, as we seem to be repeating ad nauseam, is not evidence that a treatment is effective or useful.
I don't understand why we are being asked to keep repeating this. If you don't accept this, there is little point in continuing the discussion.

 

[dundrum]

Please don't use the broken mitochondria again. It hurts and is very denegrating.
Every ME/CFS patient has to find out for themselves what's wrong and how to fix it.. GP's don't know anything, specialists even make us into non-patients.
I don't have any medical training, so I might get things wrong, but don't blame me for that.

I did a one and a half year psychotherapy training, so I do understand psychology.
But I do have an aversion to CBT, claiming they can fix ME/CFS but not delivering real results.

The reason I bring it up is because it's a major problem. There is a very famous youtuber who has just had a dubious mito test from Germany. Patients keep getting hoodwinked by this stuff.

 

[dundrum]

Short term statistical significance in subjective questionnaires that was not maintained at followup, not supported by objective evidence and not clinically significant and in an unblinded trial, as we seem to be repeating ad nauseam, is not evidence that a treatment is effective or useful.
I don't understand why we are being asked to keep repeating this. If you don't accept this, there is little point in continuing the discussion.

Yes, I'm aware. I think it's just important to be accurate in claims. The improvements were maintained at followup, and the control groups increased as well. There was no decrease in scores after the trial for CBT and GET.

 

[Turtle]

The reason I bring it up is because it's a major problem. There is a very famous youtuber who has just had a dubious mito test from Germany. Patients keep getting hoodwinked by this stuff.

Could you blame the people testing this in stead of calling the patients "gulluble".
I did 10 years of alternative things because there was nothing else in the early 90"s.
We all just want to get better.

 

[dundrum]

Could you blame the people testing this in stead of calling the patients "gulluble".
I did 10 years of alternative things because there was nothing else in the early 90"s.
We all just want to get better.

Yes, it's the doctors and scientists who are to blame. It wasn't me who called the patients gullible BTW. Calling patients gullible is a terrible thing to say.

 

[Adrian]

But it didn't. It showed statistically significant improvements for CBT and GET.

Not when you look at measures that may be meaningful (i.e. the more objective ones). The main PACE outcomes basically say if you change how you think about your symptoms you will improve. How are you thinking about your symptoms and abilities. So largely meaningless - it reminds me of magic tricks. (They failed to do corrections for multiple outcomes as well). It is astounding that they were allowed to get away with such poor work.

If you look at things like the 6mwt and the step test (which they still haven't published properly) then they show no change. Also I seem to remember in the long term follow up there was no difference.

That isn't even going into details about the bad stats on questionnaire results.

It shows the importance of being careful in reading papers and understanding the methodology.

 

[Sasha]

Yes, I'm familiar with the arguments.

And do you agree with them? And if not, why not?

 

[Adrian]

The reason I bring it up is because it's a major problem. There is a very famous youtuber who has just had a dubious mito test from Germany. Patients keep getting hoodwinked by this stuff.

There is a lot of bad science around ME and it often gets called out here. Its not just psychiatrists who do bad work. Its one of the reasons I would argue we need to build research capacity in ME and bring in top researchers who can follow good protocols and not oversell results.

 

[rvallee]

for all of us if GET would work, this would be the easiest way to improve our health, everyone would do it

Almost all of us have done it anyway, and that's another way we know it doesn't work. Not that it's needed in addition to decades of trials showing nothing. The burden of evidence is on those making claims, and no such evidence was ever produced.

 

[Adrian]

Yes, it's the doctors and scientists who are to blame. It wasn't me who called the patients gullible BTW. Calling patients gullible is a terrible thing to say.

people are gullible especially when they need some hope. If you think in the UK there are between 280,000 and 400,000 with ME (+ many more with long covid) some will be gullible and with that sized population enough for some people to unethically make money.

 

[Evergreen]

I think it's just important to be accurate in claims. The improvements were maintained at followup, and the control groups increased as well. There was no decrease in scores after the trial for CBT and GET.

You're right, it is important to be accurate in claims. What you say is correct, 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, and it was not. So what @Trish said was correct. The statistical significance that did exist did not persist.

What researchers have tended to do when the between-groups differences don't work out is focus on the within-groups differences, which are meaningless in terms of efficacy. They're only reassuring in terms of demonstrating that people did not report that GET/CBT made them worse on subjective outcome measures. Which unfortunately is not particularly reassuring, because people's self-reports are so vulnerable to being swayed, as Wechsler et al. 2011 shows. Wechsler et al. 2011 is mentioned above and is being discussed in this thread:

https://www.s4me.info/threads/activ...rvention-in-asthma-2011-wechsler-et-al.43655/

And what Wechsler et al. 2011 demonstrates so clearly is that the statistically significant differences in subjective outcomes that, if I've understood correctly, you see as evidence of some people improving from GET and CBT, tell us nothing about whether or not GET or CBT are effective for anyone with ME/CFS. But the lack of significant differences between groups in most objective measures do tell us that they're ineffective.

That's why Trish said "short term significance in subjective questionnaires".

Edit: Made a few edits for clarity.

 

[Sasha]

Even PACE failed to show that GET and CBT helped - so I think the "not shown to help" statement matches the evidence.

But it didn't. It showed statistically significant improvements for CBT and GET.

So you keep saying, and we keep pointing out why you can't trust subjective measures in open-label trials. Is there something that you disagree with in our explanations? If so, what is it?

 

[Jonathan Edwards]

NICE downgraded the evidence due to indirectness (not requiring PEM). It wasn't due to the quality of the evidence itself.

This is a non-sequitur statement.

NICE graded the evidence as poor according to GRADE. Part of that low grading was due to indirectness, but as Peter Barry made clear at the Round Table consultation before the Guideline was released (which I attended), the evidence was so poor anyway that the treatments would not have been considered cost-effective even without the indirectness factor.
So the downgrading relating to indirectness is not why NICE did not recommend CBT and GET.
The decision relied only on the quality and level of evidence itself.

 

[Jonathan Edwards]

But it didn't. It showed statistically significant improvements for CBT and GET.

Again non-sequitur. PACE failed to show that CBT and GET helped because the quality of the evidence was not up to doing that. Statistical significance is no use if there is a high risk of bias. Moreover the clinical significance of the difference was so tiny that the authors had to truncate the Y axis of the graph to make it look anything at all.

 

[Trish]

Even PACE failed to show that GET and CBT helped - so I think the "not shown to help" statement matches the evidence.

But it didn't. It showed statistically significant improvements for CBT and GET.

Yes, I'm aware. I think it's just important to be accurate in claims. The improvements were maintained at followup, and the control groups increased as well. There was no decrease in scores after the trial for CBT and GET.

It's also important when making claims about efficacy to put them in context. Just saying there was as statistically significant improvement on subjective questionnaires in the GET group compared to the SMC group at 12 months is not evidence of efficacy, for reasons we have already explained at length. The fact that this was maintained at follow up, as the authors like to claim is evidence of success is made nonsense by the lack of between group difference, as I'm sure you well know. Clinical trials of treatments should use the difference in effect between groups, not within a group.

I'm very familiar with ME/CFS, and I listen to patients. However, if you listen to patients you will see that psychological factors are important for many.

It would be helpful for us to understand your perspective in this discussion if you tell us whether you are writing from the perspect of a clinician listening to their patients, or a pwME reading patients stories on social media. I'm not asking you to tell us your name, that's up to you, but I'd like to know whether I'm trying to help a clinician understand better what may help or harm their patients, or a pwME to understand the basis of claims by their clinician to help them decide what treatment to try, a recovered pwME keen to share what they think helped them, or someone else who just enjoys provoking an argument.

 

[Utsikt]

It's frankly insulting and ridiculous to equate psychology with astrology and astrology and Scientology.

What is the foundation of psychology? It is speculations about how ‘the psyche’ or ‘mind’ or ‘self’ or whatever works. As @Jonathan Edwards has explained previously, we have absolutely no idea about any that. Zero.

So psychology essentially builds models based on unproven, and crucially, unverifiable assumptions.

So the very foundation of psychology is just shaky as astrology. Because it will always be impossible to falsify the axioms.

Actually there are multiple studies, as has been pointed out. I think what you mean is that you don't agree they are high enough quality.

It is not my opinion that they are not of high enough quality. It is a fact that they are not.

 

[Yann04]

cf. replication crisis for the results of the problematic methodological foundations of psychology.

Probably also been brought up, but there is a consistent history of psychology to psychologise diseases of unknown aetiology, until the aetiology is discovered. It’s a phenomenon that keeps on repeating itself. And when patients are told by doctors their problems are psychological, many believe them, whether or not it is true.

You should probably skim these posts https://mecfsskeptic.com/category/all-blog-posts-in-the-category-psychosomatic-medicine/

 

[Trish]

@dundrum and anyone else interested, Professor Brian Hughes book Psychology in Crisis is and enlightening read. It even has a chapter on the PACE trial.

 

[Yann04]

@dundrum and anyone else interested, Professor Brian Hughes book Psychology in Crisis is and enlightening read. It even has a chapter on the PACE trial.

Is there a detailed chapter by chapter summary of this somewhere? I’d very much like to read this but don’t have the energy to actually buy or read books.

 

[Utsikt]

Is there a detailed chapter by chapter summary of this somewhere? I’d very much like to read this but don’t have the energy to actually buy or read books.

I found a very very brief summary by someone here: https://www.researchgate.net/publication/331317113_Review_Psychology_In_Crisis