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

[richie]

In one study on post granulomatous sarcoid fatigue raised Il-6 was the only abnormal finding. Il-6 can do all kinds of things - mess with mitochondria, mess with neurology. Maybe it is both a threat and lowers "perception of threat threshold".

 

[Evergreen]

Oooh, I like this discussion.

Inasmuch as feeling ghastly with an infection is thought to be a nervous system reaction to a perceived threat I think the suggestion is fair enough. It is not clear why that protective mechanism should try to shut out conversations but various reasons have been proposed - either conservation of resources or the advantage of protecting others by not encouraging interaction.

In an infection, is the nervous system reacting directly to a perceived threat or to a signal from the immune system? Couldn't the nervous system get stuck in a loop without perceiving a threat and/or without getting an ongoing signal from the immune system?

The conservation of resources idea is the one that makes most sense to me, given how much it takes out of us to fight infections. So if we get stuck in sickness behaviour, for either of the reasons @Utsikt outlined above, we'll have difficulty with conversations. How would that work? The neural signalling would be saying something like "Long conversations are bad" because it's stuck in sickness behaviour? We've evolved to just be able to say things like "Don't eat the berries" during those times?

While we don't have evidence of classic cellular energy issues in ME/CFS, there was that Lawson 2016 paper that suggested "elevated energy production"/a "pathological mechanism by which more ATP is produced by non-mitochondrial sources". If true, how would that fit in? Wang suggested that the situation in ME/CFS looked most similar to that in cancer.

I agree that the extrapolation to the idea that you can interfere with this voluntarily is unevidenced. But I think it is fair to suggest that it is not totally implausible.

My hunch is that our best bet to jolt us out of a loop like that is to change the signals the immune system is sending, so that we change the neuroimmune conversation.

But I do appreciate that there are people who describe a very different experience to mine, where they really do feel immense fear and anxiety, and it does make sense to try to calm that down. I can't pretend to be as chill as @rvallee, but I really don't relate to the accounts of those who benefit from brain retraining. Their illness experience sounds different, and their response to mind-body interventions is completely different.

I can take a layer off my pain with meditation, and that's about it. Being calmer only benefits me to the same extent it does healthy people - helps sleep, reduces muscle tension, keeps me sane. Mind-body interventions have no impact at all on the core illness I have. I wish they did.

 

[Utsikt]

Either would do. It is worth remembering that everything in the language of neural signalling is about differences and inferences. This gets very complicated but signals received by nerves have to have a 'propositional' or sentence-like meaning. They are not just dots or clicks. They will mean things like 'there is a dot here'.

As in that the receiver would only get a signal from input X if certain conditions were met, so it getting a signal from X means that those conditions have been met?

But I’m not sure I understand what you mean by «meaning». Meaning to whom? An outside observer? I don’t understand how a neuron would have any «understanding» of why it gets a signal. It would know that something happened (that it received a signal), and have some internal logic for what to do next, but that’s different from how I normally understand understanding.

Regarding threats:
You could also describe autoimmune diseases as the body thinking that itself is a threat.

 

[Jonathan Edwards]

But I’m not sure I understand what you mean by «meaning». Meaning to whom? An outside observer? I don’t understand how a neuron would have any «understanding» of why it gets a signal. It would know that something happened (that it received a signal), and have some internal logic for what to do next, but that’s different from how I normally understand understanding.

Meaning is a very complicated concept. There is meaning to, meaning by, referent meaning and sensed meaning and a lot more. I am talking about sensed meaning - what is meant to the receiver, which as far as i can see in living systems is always a cell. The meaning we report sensing (for instance, some cells generate a report here that 'I' sense that Utsikt is enquiring about meanings of signals.) The understanding of a meaning must be an inherent property of the biophysics within a cell. That might seem remarkable but Descartes rightly points out that it is something we have to assume whatever theory we construct.

A cell getting signals signifying that Utsikt is enquiring about meanings 'understands' those signals by dint of its biophysical make up. It will not know that it has received a signal because it is not set up to know that it is a cell or that cells receive signals. A processor in a computer is not set up to know that it is a processor. It does not compute over "I am a processor doing this stuff for Jo and Utskit", it just computes over the stuff it is told to compute over. The processor is different from a cell and has no 'sense of understanding' because it does all its computing binary bit by binary bit. Cells compute over vastly rich patterns of signals that can mean more different things than there have been seconds in the universe (being combinatorial).

 

[Axel]

Didn't Pavlov show that it stores things very well?

But Pavlov did not succeed in making the dog sneeze on command.
I have nothing against behaviours that respond to stimuli. It simply seems to me that responses to illness are mediated by signals that escape our conscious awareness and feelings. This is in contrast to reactions to fear or hunger, where a surge of action within the body is clearly felt. And of course, nervous sneezing does also occur, without any external trigger.
Generally speaking, there are no reports of flu-like symptoms following concerts, and radio presenters do not develop more than others EM/SFC. One must therefore imagine the number of errors that would have to occur for the CNS to interpret a conversation as a desease threat before designing a comportemental retraining.

 

[Jonathan Edwards]

Generally speaking, there are no reports of flu-like symptoms following concerts,

I am not so sure. I can well remember one concert/musical show I attended just at the point when I was developing a viral infection. The noise greatly amplified my distress and I had the most miserable time as a result. People with meningitis find light and sound (presumably music) intolerable.

One must therefore imagine the number of errors that would have to occur for the CNS to interpret a conversation as a desease threat before designing a comportemental retraining.

If I follow what you are saying, I think I agree. We have to propose some error of processing that means that in the absence of overt infection the brain finds normal stimuli 'threatening' or at least unpleasant (and we tend to assume that brains find things unpleasant because they have evolved to avoid them).

I agree that without identifying the error attempts at retraining would seem to be guesswork at best and they are likely to be built on naive assumptions drawn from psychodynamic theory of no relevance. But it is conceivable that there might be a way to reverse the error using sensory inputs.

There are some peculiar but pretty convincing examples of sensory inputs being therapeutic. The relief of pain in a bruised hand by ice can be instantaneous and magical. In terms of 'training' it is said that King George VI was cured of a terrible stammer by being made to recite text while having Beethoven's Fifth Symphony played into his ears at full blast. He discovered that if he did not hear his own speech it came out normally and succeeded in broadcasting to the nation without problems.

 

[Utsikt]

The understanding of a meaning must be an inherent property of the biophysics within a cell. That might seem remarkable but Descartes rightly points out that it is something we have to assume whatever theory we construct.

Thank you again for spelling things out so clearly. I’ve already accepted that I’m not able to find any strong arguments against consciousness being inside single neurons, so what you describe has to follow if that is actually the case.

If I follow what you are saying, I think I agree. We have to propose some error of processing that means that in the absence of overt infection the brain finds normal stimuli 'threatening' or at least unpleasant (and we tend to assume that brains find things unpleasant because they have evolved to avoid them).

I agree that without identifying the error attempts at retraining would seem to be guesswork at best and they are likely to be built on naive assumptions drawn from psychodynamic theory of no relevance. But it is conceivable that there might be a way to reverse the error using sensory inputs.

There are some peculiar but pretty convincing examples of sensory inputs being therapeutic. The relief of pain in a bruised hand by ice can be instantaneous and magical. In terms of 'training' it is said that King George VI was cured of a terrible stammer by being made to recite text while having Beethoven's Fifth Symphony played into his ears at full blast. He discovered that if he did not hear his own speech it came out normally and succeeded in broadcasting to the nation without problems.

The examples you give appear to be overrides or distractions. Which reminded me of something I read about a couple of years ago, called Sensory Disruption of Reconsolidation (SDR). It’s the brainchild of Cathrine Sutherlands and she claims to be able to extinguish conditioned responses by interrupting the reconsolidation phase after a neuron fires. This is supposedly done by deliberately triggering the conditioned response and immediately after giving you a multiple strong stimuli at the same time.

It seems too good to be true, and I have no idea about the claims she makes about the neuroscience.

I think most of it is explained here:

OMG Pavlov! I Love Your Great Big FAIL! – SDR Therapy Community

 

[Jonathan Edwards]

It seems too good to be true,

Indeed.

 

[Axel]

when I was developing a viral infection. The noise greatly amplified my distress and I had the most miserable time as a result.

Yes. But you were already ill.
‘A script’ is already running. It is an hypothesis. The desease behaviour script.
For ME/cfs, one could certainly imagine that one of the consequences of ‘noise intolerance’ arising from ‘a script’ might itself become an effector of the script, but the idea that the script is still running could also explain why ‘noise intolerance’ is still present.
The first option would require a metonymic substitution error at its core. The second requires a ‘return to the start’ type transcription error. This is without ruling out the possibility that ‘consequential’ symptoms might produce such a signal, but partial one and already present on the normal script.

The fact that removing the most obvious stimuli triggers does not reverse the course of the illness tends to suggest that this is not a substitution-type error in the ME/cfs.

 

[bobbler]

Yes. But you were already ill.
‘A script’ is already running. It is an hypothesis. The desease behaviour script.
For ME/cfs, one could certainly imagine that one of the consequences of ‘noise intolerance’ arising from ‘a script’ might itself become an effector of the script, but the idea that the script is still running could also explain why ‘noise intolerance’ is still present.
The first option would require a metonymic substitution error at its core. The second requires a ‘return to the start’ type transcription error. This is without ruling out the possibility that ‘consequential’ symptoms might produce such a signal, but partial one and already present on the normal script.

The fact that removing the most obvious stimuli triggers does not reverse the course of the illness tends to suggest that this is not a substitution-type error in the ME/cfs.

There is also a difference between noise/sound intolerance (worse the more ill or in PEM or spent I am) and the times when I did go and enjoy a concert or something similar (couldn’t now at this level and would of course generally have needed to be rested ) but talk about after effects 24hrs later. Of course there were times I didn’t get away with it and ended up on the floor outside wherever too.

These days the closer example for me is that I was watching drumeo (they get drummers to try and put a drum to a song they claim they’ve never heard before) on short videos. When I was feeling ‘very good day’ on this factor I watched too many in a row (maybe 4-5 five min videos over an evening but they are intense not just for noise but as you can’t help but watch the skill of the drummer). I had enough ‘feedback’ to know I was pushing it after two admittedly but kept going as something kicks in as well as able to enjoy it. Then struggled to function at all for 2-3 days after (acute - couldn’t watch anything or even really text messaged or reading in here etc)

I just struggle to think that is a fear mechanism kicking in late particularly as this doing too much (obviously most of it wasn’t for fun things but trying to keep head above water, work, noise etc imposed by others) is what’s led to more debilitation. At some point earlier more self-preservation would have kicked in if it were connected to that fear system instead of ‘don’t recover’ system that wasn’t - the incredible thing is that learning doesn’t happen despite all these tropes that get back-filled as lies by bps about us and who we are.

Certainly not the learning not to touch the hot iron equivalent (which is what these psychosomatic bps theories are trying to draw on - and the absolute rule with Pavlov is that the timing of consequence after stimuli is the important part of the instrumental conditioning, and then the strength of it) for work (where being broke, missing out on all sorts are made out only alternatives) but also fun (in fact it was having to be able to turn up at work as best I could that stopped nearly all fun as well as feeling atrocious and in PEM from it).

The protective mechanism idea needs probably a more specific context to it when talking PEM (although with cognitive/sensory overload this also happens with well humans if you throw enough at them - and it’s sometimes like that and at the time)

Particularly given over riding it for all these various no options reasons ends in deterioration not the opposite medium-long term particularly where eg there isn’t full recovery , just enough to force yourself into work (like a well person having an hours kip instead of a nights sleep can be enough to perform during the day with enough caffeine and the rest, but that catches up with you if that’s every night for 1, 2,3,24weeks etc. so cumulates for others too then you eventually both can’t push thru without longer sleeps and not just function but other things deteriorate I imagine).

 

[Joni]

No, there is no reliable evidence for that.
In medical terms the time course of PEM simply does not fit with an energy availability issue.

This is very surprising to me. I'm not able to keep up with research except for a rare listen to an interview or skimming a paper, and I'm new to this forum... I knew there was disagreement over the mitochondrial involvement, but was not aware the idea of a faulty production of ATP was not agreed upon.

I listened to an interview with Prof Klaus Wirth a few months ago. He appears to be an ME researcher who blames an energy production issue. Here are some rough notes I took listening to him. Though perhaps he is speaking on his interpretations of the research and maybe others would disagree with him.

Edit to add - the idea of "regenerating" aligns with some pwME's experiences of strictly avoiding PEM for extended periods and thus improving their function. I've seen some people improve one severity level doing this (those that are lucky enough to have daily, extensive help and thus avoid crashes). Is there another way to explain people's improvement via "radical rest"?

from Youtube - The Latest Research on Mitochondrial Dysfunction in Long Covid & ME/CFS | With Prof. Klaus Wirth

Q. What is causing the crash symptoms?
"Energy dysfunction, mitochondrial dysfunction. It's a damage. An exercise-induced damage. And that's why it's so severe.
It's not only fatigue. It's not only exhaustion of ATP.
It's a real damage that limits the energy production.
And this takes a longer time to recover-- if recovery takes place at all. It doesn't take place at all in the most severe cases.

Q. Do we think that these crashes can permanently lower the baseline at least in some people?
Yeah.
We assume that with every PEM, there is a mitochondrial damage.
There is sodium overload and consecutive calcium overload because the sodium-calcium exchange is reversed.
...? its transport mode at high sodium to import calcium, so there's calcium overload
it's very damaging to mitochondria & this is a known mechanism of damage.
With every PEM there is a damage. ... It repeats again and again
And with the calcium overload the mitochondria are damaged
In the long run the pool of intact mitochondria gets lower & lower
Metabolism gets more anerobic which means more lactate, more sodium overload, more damage.
Regeneration only takes place from the pool of intact mitochondria and if it's already low, regeneration will take a long time.

 

[duncan]

There are some peculiar but pretty convincing examples of sensory inputs being therapeutic. The relief of pain in a bruised hand by ice can be instantaneous and magical. In terms of 'training' it is said that King George VI was cured of a terrible stammer by being made to recite text while having Beethoven's Fifth Symphony played into his ears at full blast. He discovered that if he did not hear his own speech it came out normally and succeeded in broadcasting to the nation without problems.

What?

 

[Sean]

The Alleged Taming Of The Amygdala

An Expedition through the Land of Promised Healing

theinterplayinmedicine.substack.com

​

a primarily psychosocial model of illness for ME/CFS and PAIS is no longer tenable according to the current state of knowledge.​

It was never tenable. At no point have the psychologisers ever put forward a robust case for their claim, and refuting other possible interpretations.

And yet they have been allowed to insert their unproven claim into every nook and cranny of the power structure they can find. Very successfully, unfortunately.

 

[Jonathan Edwards]

This is very surprising to me. I'm not able to keep up with research except for a rare listen to an interview or skimming a paper, and I'm new to this forum... I knew there was disagreement over the mitochondrial involvement, but was not aware the idea of a faulty production of ATP was not agreed upon.

Faulty ATP production has never been agreed upon, except perhaps by physiotherapists who would like to think they understand and can advise patients but who actually have no grasp of the science.

Since the 1980s there has been research which shows that as far as can be measured muscle physiology is normal in people with ME/CFS. Even the reduction in measures on the second day of cardiopulmonary exercise testing (CPET) do not particularly suggest faulty ATP production. Very few people take Dr Wirth's theories seriously and what you quote from him seems a complete confusion - concluding that the problem is tissue damage from hypoxia rather than mitochondrial failure when we have no meaningful evidence for either.

The problem with theories of ME/CFS is that they exist at two levels. One is the general medical science consensus, which sees an absence of any reliable evidence of energy failure. The other is a tiny community of enthusiasts who, like Dr Wirth, believe in all sorts of theories that do not actually have an evidence base and do not fit well with the clinical picture anyway. Advocacy groups tend to follow what these enthusiasts say uncritically and so people with ME/CFS get a garbled story about their disease.

The idea of S4ME is to try to tease out what is real science and what is hype or fantasy.

 

[richie]

Not enough energy for detailed reading of this thread. Just on terminology. LC has been equated to ME. LC as far as I know has not shown 2 day CPET worsening, 2 day CPET worsening was touted as prooof of PEM, PEM has been touted as cardinal in ME at times to a near"forget the rest" level , PEM has not been suffieicnetly defined, Wuest's Dutch cycle test on LC showed muscle changes and was refrred to as PEM ..... No consistent usage. What are we atalking about anyway?

I would like to see what SeaHorse might come up with on a cohort of pwME diagnosis and pwLC diagnosis.

 

[Joni]

Well known figure in the MCS and mold avoidance world (who also had ME/CFS for 29 years and was diagnosed by an ME specialist) says she has recovered using a variety of mindbody and retraining programs. Lately Mickel therapy is her favorite. Says there is absolutely zero chance of conflating her recovery with coincidental timing or other interventions.

She does not sell BPS related products. She sells courses related to building low-chemical homes, but says her discussing brain retraining on social media the past few years has impacted her business negatively, though she continues to do so as she believes it's the ethical thing to do.

 

[Chandelier]

Lately Mickel therapy is her favorite.

Interesting, she seems to have direct access to Mickel.
Not sure if he’s readily available to book or if that’s VIP access for influencers.

7. July

In the last 6 months I have gone from 50% recovered from chronic fatigue to 75% recovered due to Mickel Therapy.
The first breakthrough was in the first call.
I was struggling to walk 1 km, with many stops and even lying down on the grass. Walking back another 1 km was pushing me way over the limit.
Dr. Mickel suggested this was a blocked emotion causing the stress that was shutting my body down.
This turned out to be true.
I put it to the test right away by booking a salsa class.
This was a lot more exercise. Even though I was out of shape in the first class I immediately did way more and steadily increased the amount I was doing until I could dance for 1.5 or 2 hours and I can do it every day.
I sprained my ankle dancing but before that I was dancing every day.
From there I went on to expand into traveling, a week long workshop that had long full days, dating and much more activity overall in my days.

11. July
I think one of the strangest objections to the mind-body programs is that people might get too disappointed after and fall into a depression or even un-al*ve themselves because of the disappointment.

I think this can be because a lot of the times it's something that we leave until the last resort, especially those of us with chronic fatigue syndrome. It's usually the last thing we try.

If it was the first thing we tried, we probably wouldn't feel so much disappointment if it didn't work.
I also think this idea comes from a very giving our power away stance - because for me, there has been no one program or one coach who could cure me or derail me.

Gupta was a great framework for me at first, but I modified it tremendously. I did a lot of Joe Dispenza. I did a lot of other types of meditation and not very much of the actual "rounds", which is the core of the program, really.

Then I plateaued there, and then I had to find out what was the missing next piece for me.
1 briefly tried another program before finding mickel therapy, which gave me a huge boost to 75% recovered from CFS (and recoverd from MCS, MCAS, mold hypersensitivity, RADS) and I'm still going.

But for me, it's all about my own ability to discover the next tool, the next level of healing.

I know that this is an emotional, limbic, brain-based, hypothalamus-based disorder, and that the solutions are within me to find.
There's no one coach, there's no one program that could let me down.
But then finally, it's kind of like saying, well, we have some medications for malaria, and sometimes those fail.
Sometimes it's not the right medication for the right strain of malaria that the person has or it just flat out fails.

And if it doesn't work, you could be very disappointed, and there's a good chance you could die, depending on the strain.
But that's not a reason to not take the medication.

No one would ever say, well, don't take the medication for malaria because you might get disappointed if it doesn't work.
The consequences of not taking the medication are very high.

The consequences of not healing ourselves from chronic fatigue syndrome, MCS, and all the related conditions are very high in my opinion, especially for those of us who are starting off really sick like I was.

 

[Lou B Lou]

Interesting, she seems to have direct access to Mickel.
Not sure if he’s readily available to book or if that’s VIP access for influencers.

Gupta was a great framework for me at first, but I modified it tremendously. I did a lot of Joe Dispenza. I did a lot of other types of meditation and not very much of the actual "rounds", which is the core of the program, really.

Then I plateaued there, and then I had to find out what was the missing next piece for me.
1 briefly tried another program before finding mickel therapy, which gave me a huge boost to 75% recovered from CFS (and recoverd from MCS, MCAS, mold hypersensitivity, RADS) and I'm still going.

But for me, it's all about my own ability to discover the next tool, the next level of healing.

No one would ever say, well, don't take the medication for malaria because you might get disappointed if it doesn't work.
The consequences of not taking the medication are very high.

And she does the 'little parable story' that NLP/Mindbody/braintrainers patronise us with, they have been doing the 'little parable story' thing for 2 decades.

Sounds like, has the same tone as, how cult guru worshippers speak and write.
I used to know a few cult guru worshippers, they did the Perpetual Testifying, justifying, and trying to hook people in .... and they did the 'little parable stories' thing, and versions of the 'Thought Terminating Cliche' (Robert Jay Lifton).

In the early days of mind/body recovery courses the very few courses/programs (Reverse, Mickel, Lightning) were in competition with each other.

But NOW - All the Braintrainer Recovery purveyors appear to have agreed to sacrifice some of their previous marketing shpiel of -
'You WILL Recover with this program' ... for "Different things help Different People".

Commercial recovery programs/courses ALL Profit by the sick people doing one course after another after another.
.

 

[Evergreen]

People following this thread might be interested in a new poll:

Cefai wrote

Since this was the only message I got, from multiple doctors, I'm interested to understand what other people were told.

I started a new poll on What prognosis were you given by doctors, if any?

 

[MrMagoo]

If I went from 50% to 75% recovered, I wouldn't call it recovered. I’d say I’d improved. After 10 years I wouldn’t say recovered. If I got to 100% recovered I’d want to have sustained it for a decade before claiming recovery.
But then I’m not selling anything or convinced of my own specialness.