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

[dundrum]

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.

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.

 

[dundrum]

@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?

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

 

[dundrum]

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.

 

[rvallee]

I would say there's an aversion to claims of psychological causation from observational studies designed to find associations only and to claims of psychological treatment from unblinded trials relying on subjective outcomes. Since there is a constant stream of such studies in high profile journals, it is understandable that commentary on the forum would come across as "anti-psychology."

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.

 

[dundrum]

Why is that surprising when we have been subjected to prejudices and practices based on research that his so bad it should not be used as evidence for anything, and many of us have suffered at the hands of ineffective or harmful psychological therapy?

Many people with ME/CFS are happy to be helped to cope with their illness and with other psychological troubles unrelated to ME/CFS by competent therapists and counsellors.

We have psychologist members, including one, Joan Crawford, who is involved in developing guidance for British psychologists on ME/CFS.
https://www.s4me.info/threads/uk-br...ce-on-me-cfs-deadline-9th-october-2024.39995/
Members here welcome that development.

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

 

[dundrum]

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 frankly insulting and ridiculous to equate psychology with astrology and astrology and Scientology.

 

[dundrum]

There is no evidence for stress as a precipitating factor. We’ve been over this many times already. And GET was not shown to help in studies. The same for CBT.

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.

 

[dundrum]

@dundrum

No, there is no aversion to psychology. I lead a group of about 1000 ME/CFS patients in my country and many of them visite psychologists/psychiatrists. Like in many chronical conditions, the life is not easy so they do psychotherapie, take AD and so on. In this case we dont have any problem with psychology.
The problem starts when you again and again say that GET/CBT help us. Listen to the patients. In my group there is noone who would say that GET/CBT helped him. You know many especially new patients they actually do a kind of GET therapie. They go throught their limits every day. I warn them but they often dont listen. And it always finish with a crash and huge worsening of your health and often forever. The only thing which help is to respect your energy limits, what is opposite to GET.

I can tell you my example. I pushed myself several years day by day and I finished with very bad worsening of my health. I was the lucky one that my health started to improve slowly after 2 years. The only thing which I did was respecting my new energy limits. I could walk 10 minutes a day and sit 1 hour with my computer, the other hours I had to lie down. Than suddenly one day I woke up and I could do 30 minutes walk. So in this disease it works differently. It doesnt help to increase slowly your daily activity but you have to respect your limits which gives you chance to improve your limits.

So go to help the patients, they are often in a very desperate situation, nobody is against psychlogy but dont force them to the therapies which dont work.

And yes, many patients are angry because if you check the history the psychiatry/psychology stopped the biomedical research in ME/CFS for at least 40 years. The grants for ME/CFS biomedical research were blocked because many psychiatrists in the grant commisions were against biomedical research and always said that ME/CFS is psychosomatic. You didnt give us the chance for better life to research our disease and this is the biggest scandal.

The big problem of todays medicine is if we dont know what´s wrong with the patient it has to be psychosomatic :-(

Try to listen to the patients - you can learn a lot from them and focus on how to improve psychology.

And believe me - for all of us if GET would work, this would be the easiest way to improve our health, everyone would do it. We dont know nasty drugs, many of us were very sportif we would love to do sport again. But it simply doesnt work.

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.

 

[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?