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

You’ve been speaking with multiple researchers on this thread alone.

 

Now you’re getting into the territory of strawmen.

I have only been on this forum since the start of the year, but I have not seen anyone claim that

1. stress can’t affect biology
   
2. fear can’t affect symptoms

What people have said is that stress or fear doesn’t cause their symptoms. That’s a long way from saying that it can’t possibly affect any aspects of their symptoms.

As for exercise, multiple studies, including PACE, have shown that it doesn’t help. And a large share of ME/CFS patients have tried it themselves and either had no effect or deteriorated, myself included.

 

It seems you have no real knowledge of the complexity of the analysis. The indirectness argument related to a change in criteria, nothing to do with quality, yes. But if you read what I said I pointed out that this was an irrelevance. They could not downgrade three points for gross risk of bias, which if GRADE was any use they should have been able to.

The point is not what score you get on GRADE. The point is whether or not the trial can be considered reliable. It cannot. As I explain in my Expert Witness Testimony. There is nothing the least bit controversial in that testimony. I tried stout on the assembled Division of Medicine at UCL and everyone in the audience agree that the trials worthless. The problem is that in psychological medicine people are sued to such low standards that they think it is OK. And Simon Wessely wrote a book so that he could say it was sort of OK chaps cos you cannot do any better.

 

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.

 

Compatible with bias. The result was what you would expect from a trial open to major bias from subjective outcome measures on the basis of an open format. In fact the differences are rather pathetic. If the treatment was even acceptable you would probably expect a bigger difference just from expectation bias. As I point out in my NICE testimony the spurious 'benefit' of rituximab in the phase II open label study was way bigger than the difference in PACE. It looks seriously likely that CBT and GET were worse than useless.

 

So BPS researchers have said to you that they understand the limitations of unblinded studies with subjective outcomes?

Or do you mean that your impression is that they have a good understanding of research methodology?

 

Blunt criticism and/or disagreeing != an attack.

 

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.

 

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.

 

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.)

 

Would you accept that if patients know that they're receiving a treatment and they know that it is supposed to be effective, you can't trust their responses when they say they feel better?

If not, why do you think that drug trials are double-blinded with placebo controls?

 

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.

 

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!

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.

 

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.

 

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.

 

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.

 

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.

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.

 

Very very similar story here. We did so much to try and prevent the decline. I'm so sorry @CorAnd.

 

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.