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

If social interactions, emotions and stress are all known causes of crashes, why is nervous system work so controversial?​

If only physical exertion could cause crashes, it would be harder to accept the nervous system theory. However, many people crash from too much conversation, having too strong of emotions, etc. To me, this seems like clear evidence that there's some sort of overreaction of the nervous system—there's no reason something as simple as a conversation should cause someone's body to shut down unless your body is seeing it as a threat. Does my reasoning make sense here? Why is this so hard for the skeptics to see/understand?
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So the argument is basically building on the gaslighting we all receive from our family, friends, and the medical system. Except this time it's coming from other people with health issues (who may or may not have ME/CFS). Also, hello? The brain is the biggest glucose and energy hog, and using vocal cords and eardrums uses ATP as well.

They also say things in this "pro-recovery" sub like "I realized I have severe ME/CFS the other day when I went out to a loud restaurant with my friends and the noises got to me."

It's just so discouraging. Both that people with chronic fatigue or possibly other illnesses believe they have "severe ME/CFS" --because of near-total lack of awareness and public education, and lack of a biomarker -- and that they think their improvements from "nervous system work" apply to the rest of us.

Nervous system work requires looking inward. Not everyone is ready to do that.

Nervous system work can require major lifestyle changes. Not everyone wants to face that.

It’s easier for many people to spend $1000 a month playing perfect supplement cocktail bingo than to face the fact that they have been living in a high anxiety state and that is not compatible with this illness.
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This is annoying as a long-time meditator and someone deep into mind-body stuff long before I got ME, probably before many of these people were born. So sick of the condescending generalizations and dismissiveness. There are millions of pwME. We're not a monolith.
 
"If only physical exertion could cause crashes, it would be harder to accept the nervous system theory. However, many people crash from too much conversation, having too strong of emotions, etc. To me, this seems like clear evidence that there's some sort of overreaction of the nervous system—there's no reason something as simple as a conversation should cause someone's body to shut down unless your body is seeing it as a threat. Does my reasoning make sense here? Why is this so hard for the skeptics to see/understand?"

I think this is a very fair argument. The mistake is to then assume that it has implications for 'nervous system work', by which I presume they mean brain retraining or whatever. That does not follow.

To my mind, the argument for a nervous system theory has always been much stronger than one relating to energy metabolism. That is what some of us highlighted in our review in Fatigue and Biomedicine 10 years ago. DecodeME has supported that. I think it is reasonable to ask why there is so much resistance to a 'nervous system theory' especially when it is often combined with a blelief in 'neuroinflammation', which would be a nervous system problem.

If there was indeed a method for 'retraining' the nervous system to return to normal that would surely be very welcome - no need for toxic drugs. But the reality is that we have no reliable evidence that such a method exists. Moreover, anythig along the lines of Garner's 'positive thinking' has clearly been tried and failed.
 
Jonathan Edwards said:
«there's no reason something as simple as a conversation should cause someone's body to shut down unless your body is seeing it as a threat»
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This is a «fair argument»?

I agree that CNS is probably involved just based on symptoms alone, the body seeing something as a threat is quite a leap. What does that even mean? What is doing the perceiving?
 
Utsikt said:
This is a «fair argument»?
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The language is not ideal but yes, in broad biological terms a shut down response in living things usually indicates that pathways that signal adversity have been activated. So to me that is what it means. The perceiving is being done by cells that receive signals indicating adversity. Those cells are not going to be the cells whose inputs we report as 'what I perceive' but there are all sorts of levels of cells in brains that receive signals and can be considered to 'perceive' them. I agree that it is not 'the body' that perceives the threat, but rather few people have thought through this particular aspect of biology!
 
From the comment quoted by @Joni above:
To me, this seems like clear evidence that there's some sort of overreaction of the nervous system—there's no reason something as simple as a conversation should cause someone's body to shut down unless your body is seeing it as a threat.
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Conversations can definitely be too much for otherwise healthy people who are ill with infections. Is that considered to be a nervous system reaction to a perceived threat? I doubt it.

AL said something similar to the redditor in a reply to a comment on his Wired piece:
If mental exertion can cause crashes, what's the mechanism behind that? Is it "physiological," because all mental exertion is also physiological, in which case doesn't that suggest the "mind" can cause crashes, and therefore addressing the "mental" could, at least theoretically in some cases, prevent those crashes? Or is something else going on? I haven't really been able to understand how to square mental exertion causing crashes with the idea that the mind isn't crucially involved in the creation of (some) symptoms. I hope that makes sense?
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I don't think they understand the brain, or the mind, at all.

I think the nervous system, or where the nervous system meets the immune system, is likely to be where the action is in ME/CFS. But the kinds of phenomena these people describe - like this from Donnino's pilot long covid protocol:

One participant was having pain in their hand and wrist while journaling about a stressful situation. The journal exercises were then intentionally changed to be about a joyful experience. Upon completing the exercise, the participant recognized that the pain did not come on while writing about a joyful experience. The sequence was repeated with the same result. After the participant recognized this relationship, the writing toward stressors was continued but with self-affirmation and recognition of the true causal reason for the pain. Over time, the association with writing was broken.
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are just completely unfamiliar to me. That's not my experience at all. And it's not what I hear most people with ME/CFS describing. Might there be a subset of people with ME/CFS who can, for example, walk to the door without repercussions to collect a parcel they were looking forward to, but get symptoms from it if they're expecting a turd to be there? If they fix their mind such that the walk to the turd does not have repercussions, have they fixed ME/CFS, or fixed something else? I would argue the latter.
 
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Jonathan Edwards said:
To my mind, the argument for a nervous system theory has always been much stronger than one relating to energy metabolism.
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But there is evidence that our energy production systems are faulty, correct?

The redditor said, "there's no reason something as simple as a conversation should cause someone's body to shut down unless your body is seeing it as a threat."

Why is PEM caused by conversation different from walking across a room? Both activities use energy. They both involve organs and processes that rely on energy. Same with emotional stress which leads to stress hormone release--all energy consuming processes.

The redditor also says:
I guess I just don't understand what causes cognitive PEM vs physical.
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Why does conversation-induced PEM (since the cells in our brains, vocal cords, and ears all require energy) differ from exercise-induced PEM?

The redditor's argument is based on the idea that emotional and mental stress does not use energy --or uses a different type of energy than our muscles do--which is false.

This is ironic coming from BPS promoters, since they claim that the bad anti-BPS people are the ones arguing for a mind-body disconnect. Yes, the brain and cognition are intricately connected to the body! It's all running on cellular energy.
 
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Joni said:
This is annoying as a long-time meditator and someone deep into mind-body stuff long before I got ME, probably before many of these people were born.
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I hear you. I only started meditating after getting sick, but have been doing it for, what, 15 years now. Also did CBT and one of those dodgy clinics with protocols and daft book recommendations. My ME/CFS remains unmoved.
 
I don't think we have to get into cellular energy. I don't think we have good evidence for enough of a breakdown there to account for what we experience (at least at this point).

But the idea that a conversation is simple, in contrast to physical activity, is flawed. And the idea that the only reason a conversation could be taxing is if your body sees it as a threat is flawed too.
 
Evergreen said:
Conversations can definitely be too much for otherwise healthy people who are ill with infections. Is that considered to be a nervous system reaction to a perceived threat? I doubt it.
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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.

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. The problem is that there is a huge body of personal evidence suggesting that any obvious way of trying to do this has failed for hundreds of thousands of people.
 
Jonathan Edwards said:
The language is not ideal but yes, in broad biological terms a shut down response in living things usually indicates that pathways that signal adversity have been activated. So to me that is what it means. The perceiving is being done by cells that receive signals indicating adversity. Those cells are not going to be the cells whose inputs we report as 'what I perceive' but there are all sorts of levels of cells in brains that receive signals and can be considered to 'perceive' them. I agree that it is not 'the body' that perceives the threat, but rather few people have thought through this particular aspect of biology!
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Jonathan Edwards said:
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.
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Either you’d have to argue that the bits that make you feel ghastly are breaking the rules and making you feel ghastly from receiving signals that are normal, or you’d have to argue that the signals are abnormal and the ghastly feeling is a normal response to those signals. I suppose both could be off at the same time.

And you’d have to define which of the parts that are the ones that perceive a threat, but it would essentially be based on the system as a whole behaving as if there was a threat from the inside of the body.

But the BPS folks frequently talk about the fight/flight/freeze response, and that’s specifically about external threats, which result in the opposite behaviour.
 
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'. For the cells whose signal content we report as 'my experience' those sentences involve things like good and bad. We don't even begin to have an idea what the language is at the relevant level here. One day maybe there will be a science for this but I suspect I will have gone by then.

I think defining the cells that 'perceive' the threat may be almost within reach though. They might well be eccentric medium spiny neurons. That might be something we could get a handle on in my lifetime. Whether this would translate to the body as a whole behaving such and such way becomes uninteresting. But that is the only sort of language most people are likely to find helps them understand. The catch is that this leads on to the BPS claim that you can manipulate this behaviour...
 
« there's no reason something as simple as a conversation should cause someone's body to shut down unless your body is seeing it as a threat. »

I tend to think that the central nervous system knows absolutely nothing and does not react to a threat "stored" as such, unlike the immune system. It reacts to stimuli and remain alert to unusuals stimuli in particular. If a bear walks into the bedroom (in the dark) and says ‘good evening’ with your friend's voice instead of letting out a terrifying growl, your nervous system won’t be any the wiser.
On the contrary we’ve known for millennia how to overstimulate the nervous system for the purposes of torture; a single drop of water is enough. It has to fall at irregular intervals, to prevent the attention from waning. Then the poison comes directly from the SNC.
 
Jonathan Edwards said:
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.

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. The problem is that there is a huge body of personal evidence suggesting that any obvious way of trying to do this has failed for hundreds of thousands of people.
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The main contradiction is actually in how fun exertion is just as likely to cause PEM. Probably more likely, even, as we want to continue fun exertion past the point at which we'd try to avoid unpleasant ones. I have zero understanding of what all this talk about fear and threat are even about, I have never experienced any of this in my entire life, with or without ME/CFS. It's obviously a common thing, but for many of us it's completely unrelatable.

I understand what they mean, it's just not something I have ever experienced. At all, which might be the main factor. I'm just a very chill person, don't have any actual fears, have never experienced it. But even then I have seen far too many accounts of people who have no problem admitting they have problems with anxiety, and how this is all very different.

In some examples quoted above, someone is trying to make a point about fun activities being safe, but that is in total contradiction with most of our experience. Which actually goes both ways: not all unpleasant exertion causes problems. In fact most won't, if we're careful. So it's contradicted in two ways. This is literally one thing that makes PEM so maddening and so easy to trigger, and it's easy to find out, but it's a popular meme so it lives on.

All of this "threat" talk, separate from fear, which is a much higher order process, makes sense on a cellular or organ system level, but it makes zero sense as a holistic concept, does not even apply. It should be possible to make sense of it, and to develop a nervous system model that does not veer into the usual pop psychology, but it literally always does. Same with stress. There is no amount of moderating with things such "an infection counts as stress" that changes the fact that in 99% of situations, the separate meanings it can have will blur together, mostly because of all this weird "calming your nervous system" talk that is very popular, about as popular within the chronic illness community as it is among psychobehavioral ideologues.
 
Jonathan Edwards said:
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.
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Thucydides records that the Athenian plague caused the sick to behave strangely: they were extremely sociable and keen to help one another, becoming aggressive if anyone tried to stop them. And, of course, this led to the spread of the disease. Thucydides argues that it was the illness alone that triggered the behaviour. (However, given that the city was under siege, the possibility that the overall situation may have played a part cannot be ruled out.)
At least it learns that weakness and isolation has been expected during an epidemic desease since at least ancient Greece; when this is not the case, it is noted.
 
Axel said:
Thucydides argues that it was the illness alone that triggered the behaviour.
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He may have been right. Plague may be such a successful epidemic pathogen because it bypasses the 'sickness behaviour' response until it is too late. Plague tends to occur in two forms. The bubonic form creates lymph node abscesses but does not necessarily make you that ill. The pneumonic form produces a rapidly fatal and highly infectious pneumonia.
 
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