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

[Chandelier]

I wrote the following as a reply to her post on LinkedIn:

Very cool, thank you, @Grigor !

 

[rvallee]

An article from a Swiss news site that tries its hardest to take both sides into consideration, biomedical research and the neuroplasticity folks.
However, is both-sidesism the right approach?
Just have a look at the wild potpurri of subheadings in this article.
It's hard to walk away from this article without being confused.
I'd argue, they should give other promising treatments such as Homeopathy, Chanting and Oil Drilling the same space.

This is genuinely a crisis moment for medicine, and they are the crisis. Might even be the worst crisis they've ever faced, and they are completely blind to it. All of this has been unfolding in public for the last 6 years, it's easy to find out that this model was exactly what almost everyone got offered, or even forced to undergo, from day one, because it had been the dominant model for decades, despite never showing any evidence of efficacy. All entirely with the exact same premise, even wording. Everything is staked on the idea that, yes, most people seem to recover naturally, but for some people the symptoms remain, and for some of those people, it might be that healing magic could be the explanation.

A study intended to prove the effect is planned.

A rare honest admission. Thousands of studies have been done over the last century, and they all have one intent: to prove that they are right. Which is not science, is excessively biased, and makes up for a giant crisis of credibility when it is all happening while it's been known for years that most recover anyway, sometimes quickly, fewer over months, fewer still over years. This is going to lead to millions of mad howls about how they have been lying to everyone for decades, and this time it will be true.

What a shameful moment in history. It basically throws away the only thing that makes medicine work, science, and goes for the giant pile of cocaine beliefs instead. And it all hangs on positive anecdotes, most of whom are selling this stuff, while ignoring the massively larger number of negative anecdotes, and the large evidence that nothing makes a difference other than time and rest, which only leaves an unknown natural process at work.

Medicine basically going out there yelling at people to put potatoes in their socks when they sleep because it cures all colds, eventually. The crisis of confidence in experts is going to rapidly intensify, and it will comically be happening at a time when AI becomes as smart as most experts.

 

[Chandelier]

I wrote the following as a reply to her post on LinkedIn:

An interview from the same journalist with pro brain-retraining neuroimmunologist Lara Diem, co-author of these papers:

The Role of Neurorehabilitation in Post-COVID-19 Syndrome 2023

Chronic fatigue and headache in post-COVID-19 syndrome: a radiological and clinical evaluation, 2025

Multidimensional phenotyping of the post-COVID-19 syndrome: A Swiss survey study, 2022

Long Covid: Neurologin Lara Diem setzt auf personalisierte Therapie statt Polarisierung

Lara Diem hat schon 2000 Patienten behandelt. Sie erklärt, warum personalisierte Therapie entscheidend ist.

www.zofingertagblatt.ch

Long Covid: Neurologist Lara Diem advocates personalised treatment rather than polarisation.
Lara Diem has treated 2,000 patients to date. She explains why personalised therapy is essential.

You are talking about brain training. How successful is it?

I see great progress in some of the patients.
If someone responds to it, they can significantly improve their performance and control of symptoms.

...

What determines who responds to it?

You have to be careful about how resilient a patient is.
The setbacks after exertion, called post-exertional malaise, are a major risk in Long Covid.
That is why I do not use it with patients who are already bedridden.
“Reprogramming” the brain’s software — that’s how I explain it to patients — costs energy.

And how must the patient be prepared for it?

It is important that the patient supports the therapy and is willing to engage with it.
If they immediately say they have read it doesn’t work, such a therapy would be counterproductive.
It is known that patients can develop side effects when they reject a therapy.
That is the nocebo effect: negative effects due to pessimistic expectations.
But if I don’t trivialize anything for those affected and explain everything well, it is usually well received.

What exactly do you explain?

That there are demonstrable physical changes. And that stress factors have influenced the illness so that the body now classifies all stimuli as alarm signals.

...

You mentioned inflammation in the brain. Isn’t that a clearly pathological process?

These explanatory approaches are not mutually exclusive.
Stress does not only affect the psyche; it also influences the immune, hormonal, and nervous systems and can thereby amplify physical complaints.

But why was the pandemic the starting point for so many cases of post-viral fatigue?

The SARS‑CoV‑2 virus triggers the immune system extremely.
And some people — women in general because of the hormone estrogen — have a higher risk that the immune system overshoots.
If, because of the symptoms, one can no longer manage work and household tasks, an extreme stress develops in one group of affected people that keeps this system running.
In a second group, the stress was already chronic — and stress activates the immune system.
Covid then acts like a fuse that makes the system overshoot.

And if it is an autoimmune disease? Then brain training won’t help.

You have to be careful what is labeled an autoimmune disease.
In one study we saw that Long Covid patients even formed rheumatic antibodies, which, however, disappeared again over time.

So Long Covid is not, in your understanding, a true autoimmune disease?

It is certainly a neuroimmunological disease with overactivation of the immune system.
However, Long Covid is currently not considered a classic autoimmune disease.
It is probably a complex clinical picture with several biological mechanisms.

But can these regress?

In principle, yes.
The question is: what continues to trigger the immune system?
In any case, I have patients who have recovered significantly or become symptom-free.

What if the disease is already chronic?

Then it becomes difficult.
Then this false software installs itself in the brain like in chronic pain.
This dysregulation is hard to reverse.
The earlier it is treated, the greater the chance of counteracting such chronification.

With chronic pain patients you still try it — and that is exactly what neuroplasticity promises.

Yes, you try.
But a brain cannot be updated as easily as a computer.
The human brain is so complex! Unfortunately, the changes occur on different levels — and we only see the tip of the iceberg.
Especially with those patients who are bedridden, we are up against a wall.

...

Some affected people criticize that Long Covid clinics use methods that have not yet been sufficiently researched.

The evidence for neuroplastic approaches is moderate, but it is growing.
Some studies show improvements in fatigue and function, while there are safety concerns especially for patients with severe illness.
The patient must be able to manage their energy well in order to try the methods.
Avoiding overexertion remains the be‑all and end‑all.

Patient organizations write that such brain trainings have not worked in the past.

In my clinic there are patients who have benefited from such approaches, and others for whom this was not the case.
The crucial question is therefore not whether such approaches work in principle or not, but for which patient groups they can be helpful and safe.
Off‑label drug therapies also have limited evidence.
For example, attempts with antihistamines or naltrexone do not work for everyone.

There is a risk that the disease could worsen because of it.

You cannot completely eliminate post-exertional malaise from one’s life.
Even a change in the weather can trigger a deterioration.
But if you withdraw from everything, the body will certainly be overwhelmed at the next confrontation.
We try cautiously to improve the worst symptoms.
Where is the leeway?
For a bedridden patient, for example, it can be breathing exercises that calm the vagus nerve.

Many patients do that. Some doctors recommend more than that.

You must not push; the risks are too high. When we set up the clinic at Inselspital in Bern in September 2020, we did not know this yet.
But because we knew that pushing multiple sclerosis patients with chronic fatigue to more movement helps them enormously, we recommended exercise training.
We had to learn that this does not help in Long Covid.

Are there exercises without risk?

For example the stop exercise: when a symptom appears, close your eyes, imagine a stop sign, breathe deeply in and out and tell yourself “Stop, no danger.”
For patients who come with sunglasses and headphones, I advise gradually giving these up in stable phases.
It is important to allow small improvements.

How do you handle it?

It is the art of a physician to see what is possible for a patient.
I move between websites that promise a cure and patient organizations that only issue warnings.
We should be open to new things: you can also harm a patient by withholding a therapy.
And the current polarization certainly does harm.
There are very critical reactions toward patients who say: “This helped me.”

 

[Utsikt]

How do you handle it?
It is the art of a physician to see what is possible for a patient.

Their God complex is showing..

 

[rvallee]

For example the stop exercise: when a symptom appears, close your eyes, imagine a stop sign, breathe deeply in and out and tell yourself “Stop, no danger.”

You fool, the patient is supposed to step on the STOP sign and raise their hands in the air like they just don't care.

We should be open to new things: you can also harm a patient by withholding a therapy.
And the current polarization certainly does harm.
There are very critical reactions toward patients who say: “This helped me.”

The history of science is basically a hard-earned lesson in the foolishness of doing things this way. Many of the main methods of medical science work explicitly to guard against this, lessons learned in so much blood. Medicine used to push back against it, now it's invested all its money in and runs the board. All of this literally stems from Freud's worst ideas, they are very old things.

The merger of health care and alternative medicine is effectively complete. The quacks have moved from the other side of town, to down the road, and now down the hall and working shifts alongside. Zero introspection about the contradictions of those two quotes, it's as if business consultants are in charge of medicine, all ethics and broader considerations have simply been tossed out, could not possibly matter less.

Somehow there are no reactions towards the huge of number of patients who say "this has made me worse", including those who died, and who are decrying how we still have no effective therapies because this nonsense is blocking everything. This ideology might be the single most monstrous idea humanity has ever put together, aside from war itself, but that's not a single idea, so much as a delivery system for individual domination and power. The toll of death and misery already rivals all major conflicts of the last century, and that toll is absolutely revolting.

 

[MrMagoo]

Can I ask a stupid question because I’m foggy.

You know medical biology and science, do they indicate that the nervous system is activated or stressed or inflamed? I know everyone in brainytrainy says the you get stuck in a feedback loop or whatever but either there is a biological phenomenon that’s been observed (IDK high pulse, fast breathing etc) or they're just making it up.

Is it just made up or can it be proven?

 

[JellyBabyKid]

Can I ask a stupid question because I’m foggy.

You know medical biology and science, do they indicate that the nervous system is activated or stressed or inflamed? I know everyone in brainytrainy says the you get stuck in a feedback loop or whatever but either there is a biological phenomenon that’s been observed (IDK high pulse, fast breathing etc) or they're just making it up.

Is it just made up or can it be proven?

My understanding is that the nervous system is activated, which puts you under physiological stress, and this is measured by HRV.

But that's a more biological explanation; mind-body says you are stuck in fight/flight. The smoke detector is going off, but there is no fire. I am not sure the there is any more biological explanation that that? So...nothing to prove? It's an internal feeling of not being safe and brain training starts with changing your relationship to pain/symptoms and giving yourself messages that you are safe and nothing structural is wrong, it's all a false signal.

Which would suggest there is nothing measurable?

 

[MrMagoo]

My understanding is that the nervous system is activated, which puts you under physiological stress, and this is measured by HRV.

But that's a more biological explanation; mind-body says you are stuck in fight/flight. The smoke detector is going off, but there is no fire. I am not sure the there is any more biological explanation that that? So...nothing to prove? It's an internal feeling of not being safe and brain training starts with changing your relationship to pain/symptoms and giving yourself messages that you are safe and nothing structural is wrong, it's all a false signal.

Which would suggest there is nothing measurable?

Yeah that’s what I thought.

 

[rvallee]

Can I ask a stupid question because I’m foggy.

You know medical biology and science, do they indicate that the nervous system is activated or stressed or inflamed? I know everyone in brainytrainy says the you get stuck in a feedback loop or whatever but either there is a biological phenomenon that’s been observed (IDK high pulse, fast breathing etc) or they're just making it up.

Is it just made up or can it be proven?

I have never seen any explanation than it's people having symptoms that can be conceived of as being an overactive sympathetic nervous system. It's completely circular, and I have never seen anyone bother before that. And quite similar to the failed forensics science, where if a hair sample seems to roughly not be too different from another, then it can be claimed to be a match. Even though most hair are roughly similar.

It's like a model that conceives rain as angels weeping. Angels are in heaven, up in the sky, obviously. If they weep, it would fall down as if appearing from the sky. You look at water coming down from the sky, and without a better explanation, the model fits. Why would need a better model when it fits all observations? It doesn't go any deeper than this, because clearly no one cares about this being a real explanation.

 

[MrMagoo]

I have never seen any explanation than it's people having symptoms that can be conceived of as being an overactive sympathetic nervous system. It's completely circular, and I have never seen anyone bother before that. And quite similar to the failed forensics science, where if a hair sample seems to roughly not be too different from another, then it can be claimed to be a match. Even though most hair are roughly similar.

It's like a model that conceives rain as angels weeping. Angels are in heaven, up in the sky, obviously. If they weep, it would fall down as if appearing from the sky. You look at water coming down from the sky, and without a better explanation, the model fits. Why would need a better model when it fits all observations? It doesn't go any deeper than this, because clearly no one cares about this being a real explanation.

Over on the wired article it’s stated as fact and I just wondered -
1. If it’s a physical biomedical issue that can be “seen” then you would expect the possibility of drug treatments, plus you could measure the change in it to establish the impact of braintraining
2. If it can’t be “seen” biomedically, then why not?
The whole thing is just a guess of what’s being treated and what’s treating it.

I mean, I know it’s bunkum I just wondered which type of bunkum.

 

[Jonathan Edwards]

The brain retraining people have made up the 'new neuroscience'. And whatever is unhappy about an ME/CFS brain it is not a fight and lifght response. So not only is it made up but it is factually wrong.

The remarkable thing about these people is that even when they do find something biological, like a different response to buspirone, they have no idea what to do about it because they only ever did the experiment to confirm what they already believed - which was probably wrong too. There are lots of findings about schizophrenia genetics and I rather suspect that not much progress has been made in using them to work out what is going on largely because medical scientists do not open their minds and look for new ideas. They stick to the same old duds.

 

[Utsikt]

The remarkable thing about these people is that even when they do find something biological, like a different response to buspirone, they have no idea what to do about it because they only ever did the experiment to confirm what they already believed - which was probably wrong too.

We’ve seen so many studies where they claim that the goal was to prove that the intervention works, not to test if it works. It’s maddening.

 

[MrMagoo]

I was looking at the assertion in the wired article that, to paraphrase, people showed exertion/increased heart rate just visualising “climbing stairs” for instance.

I can understand that might provoke some emotion and certainly that’s enough to push up heart rate, I have been in that situation.

It was never enough to push it up as high as say, standing up though. Or as high as climbing stairs.

Any studies on that?

I thought that if someone was in theory having a heart rate that high as a reaction to a suggestion them, that isn’t a necessarily a symptom of LC or ME.



I know you know all of this, I’m just not very scientific/good at thinking.