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.
 
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