Hi and thank you for thinking about me. yes just a brief visit and the first thread I stopped at was this one. I thought what the hell is this now? My aim was to try and do a quick catch up to make sure I hadn't missed any important developments, now I've spent two afternoon slots trying to read and absorb. There are lots of points I would have like to contest but am not up it. Keep up the good work though - love you all for it.
Brain Retraining treatment for ME/CFS and Long COVID - discussion thread
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That sounds like they're saying the exertion is too much, because their program tells them to do more. But they've been told not to use that language or have those thoughts.
To an outsider, their overexertion looks like "recovery." So when they crash and pull back to rest, it looks like they are just retreating back into their illness out of fear.
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MrMagoo
Senior Member (Voting Rights)
This is also what the ideologues who push the CBT/GET paradigms say. They've been saying so for years, they're still saying it. Also people who make claims about drinking pee, not coincidentally.
Having just read through pages of this, this is what I conclude UkPoster's messages to us are:
Brain training could work for everyone with ME/CFS, but doing proper trials is too hard, so we just have to believe UkPoster, or whatever brain training proponent has been rostered onto Science for ME missionary duty this month.
There are lots of people recovering as a result of brain training (rather than as a result of natural recovery), but we just have to believe UkPoster about that.
If someone doesn't recover using these techniques, it's because they weren't ready to recover i.e. they don't want to recover.
If someone says that they are better and then get worse again, it's not because they just hoped they were better and then found out they weren't. It's because they became too frightened of recovery.
Brain training is a heterogeneous mix of positive thinking, somatic tracking, mindfulness and identifying fears and personality inadequacies. It is completely different to the BPS therapies that have been offered in trials (although they are also a mishmash of positive thinking, somatic tracking, mindfulness and identifying fears and personality inadequacies) and that have been found not to work. The difference between Brain Retraining and the BPS thinking-based therapies is that brain training is the version that hasn't been subject to trials, and therefore hasn't been proven not to work.
Edit: Oh, and brain retraining is gentle and couldn't possibly be harmful.
Brain training could work for everyone with ME/CFS, but doing proper trials is too hard, so we just have to believe UkPoster, or whatever brain training proponent has been rostered onto Science for ME missionary duty this month.
There are lots of people recovering as a result of brain training (rather than as a result of natural recovery), but we just have to believe UkPoster about that.
If someone doesn't recover using these techniques, it's because they weren't ready to recover i.e. they don't want to recover.
If someone says that they are better and then get worse again, it's not because they just hoped they were better and then found out they weren't. It's because they became too frightened of recovery.
Brain training is a heterogeneous mix of positive thinking, somatic tracking, mindfulness and identifying fears and personality inadequacies. It is completely different to the BPS therapies that have been offered in trials (although they are also a mishmash of positive thinking, somatic tracking, mindfulness and identifying fears and personality inadequacies) and that have been found not to work. The difference between Brain Retraining and the BPS thinking-based therapies is that brain training is the version that hasn't been subject to trials, and therefore hasn't been proven not to work.
Edit: Oh, and brain retraining is gentle and couldn't possibly be harmful.
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MrMagoo
Senior Member (Voting Rights)
Yeah, Isnt this basically just trolling the site?
It’s science4ME not lovely whataboutery theories on ME
I assume the point is to pick up desperate readers of the thread who might be wavering, sitting on the fence, wondering if some previous trauma really is the cause of their illness.
I assume it is also to test out what arguments for brain retraining work best.
Yes it does come across as a part of a campaign, with a new brain retrainer dropping in to tell us their 'truth' and to 'save us' every now and then.
It may even be a genuine desire to help people, but without understanding that brain retraining may not actually help to cure ME/CFS at all and may leave many people poorer, sicker and psychologically scarred by 'failing' at brain retraining, just as has happened with CBT/GET.
I can't help contrasting this approach with that of Doctors Fluge and Mella, who with a true ethical sense of responsiblity towards sick people, meticulously carried out a series of clinical trials of Rituximab and warned people not to try it until the trials had been completed.
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Ah yes, the great Dr Frank-N-Furter.
RIP Tim Curry.
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MrMagoo
Senior Member (Voting Rights)
Fair.
Feels like trolling to me.
JellyBabyKid
Senior Member (Voting Rights)
Which reminds me that exorcisms are now called "delivery ministry"
JellyBabyKid
Senior Member (Voting Rights)
Me. I am definitely wondering that. But I suspect it was the pneumonia and resulting surgery that triggered both the trauma and the ME/CFS.
I have to assume not, given that every time we ask them for a recommendation of a programme, free resources etc, the answer always seems to be "look on the internet".
As someone who is both neurodivergent and has a lousy sense of direction, I need people to be more specific.
MrMagoo
Senior Member (Voting Rights)
I love that answer, it’s like saying “look in the world”
If at least there was theory in there, it might be worth discussing. Despite years of following the ins-and-outs of this industry, I have not come across a single actual theory. Models, assumptions, products, sure, the whole nine yards. And they're all basically the same thing anyway, so that's just the one thing endlessly recycled.
Theories? As in scientific theory, not the everyday "I have a theory" that actually means a vague hypothesis. Not a single one has been produced in over a century. Not even evidence that could become a theory, only assertive speculation, as is tradition.
So there really is nothing to discuss here. We seem to be in a wave where proponents of those models love to both trot out anecdotes, which may or may not actually support their products, while claiming those patients have been silenced. All of which ignores the 100x more anecdotes of harm, and aims to keep us prisoners of this nightmare.
It's beyond obvious that this dead horse has been beaten so badly there isn't even a single molecular structure left intact. There is nothing there, at all.
Felis Catus
Senior Member (Voting Rights)
Well, the more you beat it, the more expensive courses you get
MrMagoo
Senior Member (Voting Rights)
Meme - Regina George, Mean Girls “why are you so obsessed with S4ME?
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rainy
Senior Member (Voting Rights)
UkPoster:
"Some of the BT programmes are not as good as others. Which is why you hear people say they've tried a few before finding one that helped them. I don't think it should be that way."
"No one is 'accusing' you of anything. The fact that you think that is a sign BT needs to be better explained."
But research isn't possible, so we'll never know which ones are better. And these programmes are ridiculously overpriced, but sick people just have to shop around and keep trying to see which one is the good one.
If BT people cared about BT's reputation they would call out the programs they thought were bad so patients didn't waste money and hope.
Patients have payed a lot of money and time to be explained BT, so if it wasn't even explained well, a lot of BT programs are very bad.
If you know the cure, wouldn't it be in everyone's interest to get a really clear explanation out there? BTs have thought they have the cure for a long time now, but no one has seen it as important enough to explain it well?
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Hoopoe
Senior Member (Voting Rights)
What do you even need brain training courses for?
Just go out into the world. Ordinary activities provide all the opportunities for growth, happiness, challenges and learning.
Learn a new skill, try new things, find ways to improve what you're already doing, meet new people, take up a new hobby, do things that increase your well-being. Even just being out in nature and doing nothing but relaxing will have a meaningful effect.
Just go out into the world. Ordinary activities provide all the opportunities for growth, happiness, challenges and learning.
Learn a new skill, try new things, find ways to improve what you're already doing, meet new people, take up a new hobby, do things that increase your well-being. Even just being out in nature and doing nothing but relaxing will have a meaningful effect.
Chandelier
Senior Member (Voting Rights)
That’s a remarkable aspect.
Why do we not hear of any recent in-group fights between different brain retraining gurus?
Let’s assume for a second that there was no (0.0%) treatment effect to be had from these techniques for ME/CFS, wouldn’t we still expect the different movements to publicly critique each other’s approach as inferior?
Why is there apparently no advertisement drive to try to set one’s approach apart from the competition?
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