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

dundrum said:
Well the problem we have is [1] patients are dying from malnutrition and [2] patients are recovering from doing things like "brain retraining". So I don't think it's good to just do nothing.
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In addition to the excellent points made by @Utsikt and @Jonathan Edwards in response, who said anything about doing nothing? Not me. So that's a strawman argument which I'm going to park until we deal with the argument I actually made, which is that severe patients should not go near a rehab trial [your term] until (a), (b) and (c) above were met.

I think safety is important and the level of risk involved in a trial with severe patients is too high, as even a small percentage getting worse could mean people dying or ending up in unbearable suffering, and severe patients have reported worse outcomes than mild and moderate patients with rehab interventions such as GET. Individual severe and very severe patients are of course free to make their own decisions, and some will decide that they're happy to take on that risk - that's their prerogative and I respect it.

To deal with your strawman argument, as @Utsikt has already said, the solution to patients dying from malnutrition is feeding them and medical and dietetic interventions to prevent malnutrition developing in the first place. Not coaxing them to try untested therapies. As @Jonathan Edwards already said, patients report improvement and recovery from all manner of things, not just brain training.

As @Deanne NZ and @Jonathan Edwards have already said, patients also report deterioration with brain training. I have a friend who has improved a few times with various brain training approaches. Unfortunately, these improvements have not lasted and for the majority of the decade I have known them, they have had moderate-severe ME, currently severe. I watched a friend with very severe ME follow everything they were told in brain training and get very confused and upset when despite doing everything they had been told to calm their nervous system, there was no change in their ME. That was really hard to watch. I watched another friend enthusiastically embrace brain training, reporting how well they were doing with it, but there was no change in their functioning, and they are more incapacitated now (at the level of severe ME, though without a diagnosis).

dundrum said:
There are many aspects of these therapies that aren't problematic, and which seem to help patients.
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Do share - would love to hear more.

What are "these therapies"? Are we talking about brain retraining now or CBT or graded activity or what?

dundrum said:
So what is wrong with either testing those, or offering patients advice?
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Will need to hear what you're talking about to know if there's anything wrong with testing them. If it's something akin to meditating, then there may be relatively little risk, as long as it doesn't come with promises. Offering patients advice about untested therapies is only ethical when it is first explained to them that these therapies have not been tested and we don't know if they will make them better or worse, so they proceed at their own risk.

dundrum said:
Surely death or permanent disability isn't the desired outcome here.
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Huh? This seems to be a continuation of the strawman argument above.

dundrum said:
Giving up and doing nothing until someone finds a biomarker or similar doesn't seem useful either.
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Who said anything about "giving up and doing nothing until someone finds a biomarker"? Not me.

dundrum said:
If it is a functional issue in the brain, it's likely going to take another few decades to show that definitively.
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That seems very pessimistic to me, and surprising coming from someone so optimistic about the utility of brain training. But it would be a good way of generating unwarranted despair to make brain training more enticing.
 
Utsikt said:
Why is that?

My intuition agrees, but I struggle to express why atm.
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If you are experimenting on humans then you need to show value from those experiments (i.e. show that the risk of carrying out the experiment is worth it). But if your methodology is too weak to get any value from the experiment then you shouldn't be doing it as there is only risk and very little value
 
dundrum said:
It's frankly insulting and ridiculous to equate psychology with astrology and astrology and Scientology.
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It's an odd interpretation of what I said, but just in case you really misunderstood what I said, what I meant is that our criticism of psychology is merely reflective of the fact that it has completely dominated everything that relates to us for decades, imposing their model of reality on us, whereas we would be just as critical of anyone doing the same regardless of the nature of their model, whether it is based on astrology, or even if, for some reason, it was podiatric in nature.

You are not aware of the history here, hence why you keep stating that you want to happen in the future what has already been done to death for 3 decades. Most of the studies from psychosomatic ideologues about ME/CFS in the last 10 years have been copy-and-paste versions of things that have already been done. They have not changed a single meaningful thing, they just keep trying the same nonsense with the same methodologies and claiming success regardless of what the outcomes are. It is simply not serious. Just because they take themselves seriously doesn't change that.

If some virologist or immunologist came along stating that our illness is basic AIDS and that our T-cells are dead, or whatever, we would be just as harsh about them. Especially if they were given the power to impose this on us, a power that psychosomatic medicine has been handed with zero accountability for decades. But that's not the case. And neither have astrologers. But we dismiss pseudoscience equally and regardless of its nature, it's just that psychosomatic ideology has completely dominated everything, is cheap to produce in quantity with little regard to quality, and this is the only reason it receives more criticism than, say, Scientology, whose claims are very similar in substance.

But I am done with this discussion, it's entirely pointless. This is a science forum, not a place for rhetorical marketing.
 
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Evergreen said:
I watched a friend with very severe ME follow everything they were told in brain training and get very confused and upset when despite doing everything they had been told to calm their nervous system, there was no change in their ME.
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In Sweden there is a fairly famous influencer who advertised brain retraining. Her husband has ME/CFS and her Instagram is full of posts about the disease. They both publicised his journey with brain retraining in very positive terms. She even wrote they believed ”We will now finally get rid of ME/CFS with this method”. That was last year.

This spring the husband posted on Instagram that brain retraining did not help despite his best efforts.
 
CorAnd said:
In Sweden there is a fairly famous influencer who advertised brain retraining. Her husband has ME/CFS and her Instagram is full of posts about the disease. They both publicised his journey with brain retraining in very positive terms. She even wrote they believed ”We will now finally get rid of ME/CFS with this method”. That was last year.

This spring the husband posted on Instagram that brain retraining did not help despite his best efforts.
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That’s terrible, I’m sorry he had to go through that.

Did the influencer go back on her claims or take any responsibility?
 
The sad part is that while the couple were heavily advertising brain retraining, I’ve had many people tell me I have to try this as well.

However, no one said anything when the husband posted that he did not improve and the method didn’t work. It just slipped by unobserved.

What got stuck in people’s minds is not the failure of the method, but the intense publicity and false claims that brain retraining would cure ME/CFS.

This couple did a lot of damage, if you ask me.
 
CorAnd said:
However, no one said anything when the husband posted that he did not improve and the method didn’t work. It just slipped by unobserved.

What got stuck in people’s minds is not the failure of the method, but the intense publicity and false claims that brain retraining would cure ME/CFS.

This couple did a lot of damage, if you ask me.
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Fake news above the fold on page A1 in the middle of the week. Retraction and correction in a small paragraph on page A22 of the week-end edition. A classic.
 
This thread has been fascinating and I appreciate the time and effort everyone has gone to to explain their point of view.

Can I ask a couple of really basic clarifying questions?

As I understand it, where pain persists and is not structural, then the mind-body approach says that this is a faulty signal in the brain (the "alarm system") and brain retraining can calm things down, as it teaches the brain that the signal is a misfire as the causative issue has resolved. MBCT does similar in that suggests it both reduces pain or at least allows you to cope with it better, ditto depression.

However, this approach seems to have expanded (much like CBT) to other areas, as I understand it, so that any ongoing symptoms after an acute infection or resolved precipitating event are considered to be mind-body/classical conditioning and can be reversed by brain training, as no causative/sustaining event (e.g. viral persistence) has been found.

However, ulcers, which were considered to be stress have now been shown to have a causative agent and this can now be treated with medication, likewise MS.

Listening to Howard Schubiner talk about ME and LC he says that this is the ongoing mind-body, which is classical conditioning, and is creating symptoms long after the acute event.

I know correlation is not causation and this is a really simple question, asked out of genuine curiosity, but doesn't this suggest that we haven't found the right test for the cause yet?

Thank you again to everyone who posted papers and links, I have found it helpful to go back to basics to understand "from the ground up".
 
JellyBabyKid said:
As I understand it, where pain persists and is not structural, then the mind-body approach says that this is a faulty signal in the brain (the "alarm system")
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Yes, that’s one of their explanations, but I don’t think it has been proven.
JellyBabyKid said:
Listening to Howard Schubiner talk about ME and LC he says that this is the ongoing mind-body, which is classical conditioning, and is creating symptoms long after the acute event.

I know correlation is not causation and this is a really simple question, asked out of genuine curiosity, but doesn't this suggest that we haven't found the right test for the cause yet?
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I suspect «this» means the lack of biological explanations for ME/CFS? If so, yes. The mind body supporters often assume perfect knowledge in the sense that we currently know everything there ever is to know about our biology. Which is obviously false.

It’s also why for FND, they have started using positive signs for diagnosing it, instead of actually ruling out other causes. Which is just as illogical as it sounds.
 
Utsikt said:
The mind body supporters often assume perfect knowledge in the sense that we currently know everything there ever is to know about our biology.
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That's what I thought he meant. We haven't found evidence, therefore there isn't any. But if they are only looking using standard tests then they won't find any evidence, but that isn't proof it doesn't exist
 
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