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

Or the consequences of not using robust methodology..

 

@dundrum

Also some years ago after many analysis of PACE trial from experts and ME/CFS organisations and many complains there was an independent UK healthcare authority (I dont remember the name) which examinated around 330 GET/CBT studies in ME/CFS field. The authority said that 310 studies had very bad quality and 20 studies bad quality. There was no study with a good quality!!!
The numbers are not 100 % exact but I think I remember it good but maybe the others have the link to that statement where you can find the exact numbers.
Is it not scandalous such a bad quality?

 

And IIRC the committee that found that had a bunch of BPS people in it.

 

Are you confusing ICC with CCC (2003)?

ICC was a sort of retrograde move back to 'ME' after CCC had made a reasonably sensible stab at defining ME/CFS as the illness described by both terms but requiring PEM to avoid including general chronic fatigue. ICC was all about trying to define a 'neuroimmune' disease based on speculative ideas about causation that have mostly not stood up and at the time were very dubious.

 

I have the impression that you haven't read @Jonathan Edwards's expert witness statement, @dundrum. It's here, starting on p.5. I don't think it's possible to claim to be familiar with the critiques of PACE and GET/CBT studies generally if you're not familiar with the arguments made in that statement.

To talk about rigour in psychological studies, it's necessary to know what rigour looks like.

 

Speaking of @Joan Crawford, she directed me to this asthma paper which illustrates the problem with subjective outcomes better than anything else I've seen, and demonstrates that yes, unblinded studies with subjective outcomes are worthless for telling us whether the interventions being trialled are effective or not. https://www.nejm.org/doi/full/10.1056/NEJMoa1103319

Here's figure 4 from the paper, where the placebo inhaler and sham acupuncture perform nearly as well as the effective albuterol inhaler on subjective outcomes:



And here's figure 3 of the paper, where the objective outcome clarifies that albuterol is effective, while the placebo inhaler and sham acupuncture are revealed to be as useless as no intervention:


In the BPS part of the ME/CFS research world, we are swimming in figure 4s.

 

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

 

Yes, I'm familiar with the arguments.

 

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.

 

No, I'm not. They are two different criteria, and research uses them both. I agree with your points about ICC. All the criteria are somewhat subjective. Cognitive dysfunction is entirely subjective when diagnosed.

 

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

 

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

 

We are also very much just as anti-astrology, anti-homeopathy and anti-Scientology if it comes to it, for the exact same reasons. Actually, we would also be just as anti-podiatry or anti-dermatology, if were to frame things this way. They just don't really have a significant presence in the literature.

The idea that this aversion comes from any other reason is frankly insulting. So is the idea that this hasn't been tried, explored or researched fully enough. It has. Long ago.

 

It's certainly understandable, but very unhelpful in a number of ways.

 

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

 

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.

 

Tuha, I completely agree with everything you say. You seem to be assuming I'm saying something that I'm not. 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. This doesn't mean they're pushing through or ignoring symptoms.