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

dundrum said:
I was ask the same: why do you attack them?
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Because they are not only incompetent but they constantly try to sell their treatments to the media and the health care professions despite having no reliable evidence of efficacy. Maybe that isn't obvious to you. To me they sound like charlatans as soon as they stand up and talk. As I said, it was new to me seeing people bullshitting like this having been used to academic debate in internal medicine.
 
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dundrum said:
Again: these constant attacks are why researchers aren't interested in joining s4me.
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The only researchers who don't come here are the ones who cannot defend their work in the light of legitimate criticism. The quality researchers have stayed with us.

This is a very tired old meme that researchers are put off by the patients. The only person who genuinely seems to have been put off was Simon Wessely who, in his own words, could have handled things a bit more diplomatically.
 
dundrum said:
that exercise can be helpful
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An interesting point. What evidence do you know of that shows that exercise makes ill people better? It prevents a number of health problems but I have been trying to find a single case of it making ill people better. There may be some but I have not pinpointed one yet.

(Exercise presumably helps to reduce weight and improves glucose tolerance in type II diabetes but I assume the benefit is from the weight loss and could be achieved without exercise.)
 
dundrum said:
There are many experiments that look at fear avoidance in ME/CFS, and there are many studies that have looked at stress as a trigger, and the stress response in patients.
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Sure, but do any of them tell us anything reliable or relevant. You keep saying there are many of these or that but let's have some data to look at. I have seen nothing that one could rely on to tell us anything useful. Where is there any reliable evidence of 'stress a trigger'. The methodology of the studies I have seen flagged up here is just too poor to take seriously.
 
dundrum said:
Sorry, I don't have time right now to show specific examples. However, from memory, I remember many people saying that psychological stress doesn't affect biology, only the other way round. Jonathan Edwards does correct this misconception, but many posters seem to say otherwise.
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I think you will find that on a public forum there will be many people with misconceptions about all sorts of things, just as I have misconceptions about all sorts of different things and all sorts of people will get things wrong and speak nonsense. The strength of S4ME is that relevant misconceptions will be corrected. I'm sure you will find a thread where there a misconceptions, but I'm fairly certain it will not have happened in a discussion that was of any relevance. I certainly have been corrected on S4ME for my own nonsense I have spoken!
dundrum said:
How do you define "compatible with bias"?
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Perhaps you will be satisfied that Fluge and Mella are able to "create more improvement in patients" using a substance that has been shown to have no efficacy in the treatment of ME/CFS, than CBT and GET were able to in PACE.
 
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Ten years ago I was only too ready to give the BPS people the benefit the doubt and try to see the good points in their work. But over those ten years I have seen so many appallingly bad studies published by these same people and so many more flaws in the central ME/CFS studies that I am resigned to the fact that they simply have no idea what they are doing.
 
dundrum said:
There are many experiments that look at fear avoidance in ME/CFS, and there are many studies that have looked at stress as a trigger, and the stress response in patients.
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I am living proof that fear, deconditioning and avoidance have nothing to do with ME/CFS.

I have been assesed by 5 different psychologists throughout the years. They all concluded I have no psychological issues whatsoever, no fear, no phobias, no problems.

At the beginning of my illness I did lots of therapy with a psychologist specialized in stress. I also did 2 half-a-year courses on stress management. I did lots of CBT (and lots of graded exercise therapy). All in all I did 4 years of therapy in different forms and with different psychologists.

I believed therapy would cure me.

I was biased towards it, I wanted it to work. I’ll never forget how my first psychologist told me after a year of therapy that I was her star patient because I always gave 110%. And my last therapist told me she had nothing more to teach me about CBT, as I had learned the manual by heart and applied it as well as anyone could.

No amount of therapy or exercise helped me. I got worse and worse for 11 years until becoming severe.

Even when I became severe 5 years ago, I still believed in therapy and GET, and I continued doing them, until one day I realized they were not only not helping but harming me.
 
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Jonathan Edwards said:
Ten years ago I was only too ready to give the BPS people the benefit the doubt and try to see the good points in their work. But over those ten years I have seen so many appallingly bad studies published by these same people and so many more flaws in the central ME/CFS studies that I am resigned to the fact that they simply have no idea what they are doing.
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Is that really humanly possible, that they don't know what they're doing? They're professors, some of these people, and a child can understand the problem with subjective measures in an open-label trial (literally - I have explained it to a child, who understood it).

If someone doesn't understand it, I would have thought it would be possible to drill down and quite rapidly get to the point where they do understand it. I think that would be harder in correspondence, where people can duck and dive and wander off onto other topics, but in conservation, with someone as determined as yourself, there'd be nowhere to hide. Have you had such a conversation with someone defending such trials? I can't imagine how that would go without the person on the receiving end having their mind changed.
 
Just a point to add on PACE: The NICE committee chair Peter Barry pointed out that the decision not to recommend GET and CBT was not dependent on the indirectness factor. The quality of the evidence for a useful effect was already so poor that they were considered not cost effective even without the indirectness issue. It is all pretty irrelevant because of the poor quality of GRADE but that is how it worked out.
 
Sasha said:
Is that really humanly possible, that they don't know what they're doing?
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Absolutely possible, Sasha. The first law of human nature is that beliefs trump reason. What we call psychology is the issue. And the huge irony is that the psychologists are the ones who do not understand the psychology of scientific argument. The physicist Richard Feynman knew more than they do. As he said - the easiest person to fool is yourself.

Sasha said:
Have you had such a conversation with someone defending such trials? I can't imagine how that would go without the person on the receiving end having their mind changed.
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They just get the ump and change the subject or march off. Or call me disloyal. Or prattle on about something like 'pragmatic trials' that illustrates just how little they do understand.
 
Jonathan Edwards said:
They just get the ump and change the subject or march off. Or call me disloyal. Or prattle on about something like 'pragmatic trials' that illustrates just how little they do understand.
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It's such a pity we've never been able to get them on TV being grilled by a journalist on this, for all to see, or in front of a select committee.

I know that some people on the forum are keen about legal action but I'd be happy just to see this unbelievable stupidity and hubris exposed.
 
dundrum said:
The other reason are all the personal attacks, usually in the aforementioned threads.
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dundrum said:
Well, I think that's a problem. What I see is a lot of misinformation about biopsychosocial being continually spread here. Then, those misunderstandings lead to personal attacks and unfairly panning studies before even looking at them.
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Please use the contact moderators button at the bottom of any post you think breaches forum Rule 1.
 
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dundrum said:
Again: these constant attacks are why researchers aren't interested in joining s4me. That isn't going to change until the atmosphere changes. I won't be sticking around unless I'm able to change the moderation here, although that seems unlikely based on this thread.
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Kitty said:
I don't understand why this is important enough to repeat. It's fine for people not to want to join the forum if they don't like the way we approach things.

I avoid joining social media groups where opinion is confused with evidence. Which is also fine.
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Discussion of whether researchers do or don't come to this forum and why is off-topic for this thread; further posting on this will be deleted. Comments on how science is discussed on the forum can be made on
How do we discuss science and medicine on S4ME forums?

It would be useful to read that thread before posting on it to avoid repetition.
 
dundrum said:
Also, many posters reject the idea that fear can affect symptoms, that stress affects symptoms
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We are actually mainly saying that this is not relevant to our experience, that the claims they make are far outside of what is evidenced, and that claims that this is an effective treatment paradigm for ME/CFS is simply false. Which it is, there is simply no evidence for the relevance of these things to this illness.
 
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