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

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.

 

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.

 

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.

 

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

 

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.

 

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.

 

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?

 

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.

 

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.

 

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.

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

 

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/

 

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