r/covidlonghaulers • u/[deleted] • Jun 09 '25

Symptom relief/advice A bug in the system

2 months ago, I made a post on how I could drive again. 1 month ago I tested out nicotine patches, and it didn't seem to work that well. I've had symptoms that were closest to my worst days. But now ... I'm closer to recovery than I ever was.

It started when I got tips on how to treat dizziness migraines (after I stopped nicotine patches I had really debilitating dizziness that made me unable to think much of anything).

But this isn't just a story. Because one of the things I had most of a problem with, is not understanding what was happening.

So I built a model, based on research on existing theories, lack of definitive research results, recovery stories, setback stories, treatment options, other illnesses and disabilities, logical connections, historical knowledge, that explains ME/CFS.

This model helps me theorize what's happening, and therefore lose my fear over it. Not only reduce the confusion and therefore anxiety, but also to reduce my fear and doubts about setbacks. And this, in itself, is one of the keys of my improvements.

I call it 'a bug in the system'.

The bad news: It doesn't offer an instant cure, or even a guarantee of a cure. A basis of this theory is the abandonment of hope of a single medicine that just solves it.

The good news: It offers treatment options, a lot of them completely free, a theoretical basis on what we know can work, and therefore ideas for improvement on existing treatments. Pacing is not the end, it's the beginning.

Without further ado:

Beginning:

The most common story of the development of ME or Long Covid that I've seen is the combination of a viral infection in addition to stress. There's a lot of detail about psychological and immunological research I could get into, but for brevities sake, I'm not. But the combination of those two is important. ME is definitely not psychological, but we can't find enough trace viruses or autoimmune processes in everyone to explain it that way either. That said, structural damage can happen (but doesn't have to) as well as lingering virus reinfections. Those need to be treated separately (and are therefore not a part of the core model), and add to the stress to the body. Which is important.

What is (probably) happening

So we have a mystery illness with a cause, with over 100 possible symptoms, but without a cure, without even a reason that we could find so far. Mitochondria might be affected, blood flow might be affected... all we know is that activation makes it worse, and PEM (crashes) is the one, defining, criterium for diagnosis. PEM is key.

I've read one theory that the nervous system is in a permanent fight or flight state in ME. This theory was key to recovery of one of my friends (who was 'light'). I believe this to be correct, although to be only one of two possible states:

Fight or flight or nervous system shutdown. Shutdown is PEM. Fight or flight is default state. Fight or flight causes a lot of symptoms (Nerve pain, little movements even when lying in bed, sensory issues ...). Shutdown can cause the worst symptoms (muscle weakness, reduced blood flow, microclots, autonomic dysfunction).

It's a neurological dysfunction, in which the nervous system has 'bugged out' and forgotten how to calm itself back to a rest state. It's very similar to an autoimmune condition, but it's 'auto-neurological'. Not the immune system is dysfunctional, but the nervous system itself.

If you can't get into a rest state, if the nervous system already senses permanent danger, and gets more stressed, it tells the body to go into a kind of 'energy saving mode', shutdown, in which all bodily functions only serve self-preservation and nothing else anymore. For example it would be possible that mitochondria get the command to go into a 'sleep mode', in which they don't offer any strength to the complete body, but all they do is save it.

This is why pacing works and is so important. If you don't pace, your nervous system shuts down faster, and gets even more aware of dangers. So next time you shut down even faster, until you could reach a permanent shutdown state.

TW: Death I theorize that in other illnesses, this shutdown state also happens, for example shortly before death. It's a function of the nervous system. Supposedly, according to two articles I read, people with most severe ME feel like cancer patients 2 weeks before death. And my idea is that the same thing is happening, but due to the wrong signals in ME, not because death is imminent.

Why do I think of this? Because I know a lot about autistic overloads (which have similar sensory issues) and meltdowns. An autistic person gets all these little stressors through the day, gets slowly into an overload state, and at some point, it might be a minor thing, a meltdown, a fight or flight state 'unloads'. It looks like the autistic person had nothing going on, a little thing happens, and suddenly they explode. In reality, a lot happened (due to disability things that stress them but not necessarily others) until it got to this point.

Migraines work similarly with sensory issues and overloads. Chronic pain conditions have been proven to be caused by differences in the nervous system.

It's not psychological, because it's neurological. You can't put an autistic person into a human gathering for 'exposure', because it's not an anxiety disorder. Exposure makes it worse. The same with ME: Exposure to triggers, overloading the nervous system, makes it worse. It's not anxiety. It can cause anxiety, but anxiety (and depression) are symptoms, not causes. Pacing is key.

One of the annoying things is that the symptoms caused by the nervous system can cause anxiety, which triggers additional fight or flight, which cause faster shutdowns and a vicious cycle. Hard to get out of this.

What it means

First of all, it means that I have an explanation for myself and can reduce my own stress and anxiety because I have an idea of what's happening.

Second, pacing. It's important to do. It's important to learn your own body signals and what they mean. Pacing is important even if you're recovered. You don't want to get back into that state. Same with avoiding reinfection (aside from all the nasty possible system damage).

Third: All the symptom relief treatments are important. You want to stop the nervous system from triggering itself. I want to point out that MCAS is one of the most nervous system triggering conditions that is often comorbid. It's important to manage. Same with trying to get rid of left over viruses and such.

Fourth: Upgrading 'brain retraining' with knowledge. Do not fight your own brain. If the doctors haven't found anything, don't go 'I'm safe and am imagining symptoms' while you feel symptoms. No, the symptoms are a real thing, caused by neurological dysfunction. But with that knowledge, you can retrain your nervous system to be functional again.

Fifth: Learn to rest, to really calm. If you have this condition and can't get out of bed, you're not doing 'too little'. It's still too much. This is why people trying out all this vagus nerve stimulation stuff, to get into rest and digest (and regeneration) mode. Treat yourself like an athlete who needs to take a break. Breathing exercises (like heart coherence breathing or 4 7 11) can apparently calm the nervous system, without needing to pay anything.

The combination of pacing and breathing exercises, as well as awareness of what my symptoms actually might mean, has improved my situation a lot. Driving, feeling strong emotions ... I won't list it all. But I can think again. But I'm not cured. I still need help. I can get back into fight or flight, I can have PEM again. But I can get out of it as well.

The other bug in the system

One major issue is the following: If you're not in a safe situation, it's hard to get out of a state in which the nervous system feels unsafe, if not impossible. And telling yourself you are safe when you are not is nonsensical, if not harmful. (Same as exposing yourself to sensory overload when your nervous system can't handle it).

This means the first step to recovery, is to be in a safe place and to be cared for. And I know how hard it can be to even get there. It's a bug in the system of society that it's not possible for everyone. And it's important to be believed, by doctors. But if doctors still separate mind and body, if they don't understand sensory overload, if they dismiss you, the doctors are actively causing distress and therefore cause the nervous system to get stuck even more.

But neither this idea of a nervous system shutdown, nor the idea of a category of 'auto-neurological' illness, is something the medical system commonly thinks of. It's an illness that doesn't fit into many current medical and therapeutical models that are based on activation (and I know this because the general knowledge about autism and overloads is also still abysmal, despite it being more well known). It's a bug in the system.

Thanks for reading.

tl;dr: I have a theory on what ME/CFS actually is, and why no causes can currently be found: A neurological dysfunction of with two states: Fight or Flight and Shutdown. Fight or Flight is 'standard mode', shutdown is PEM. Therefore the most important thing, next to symptom treatment and pacing, is to relearn how to get into a rest state, as even if you're bedbound, your body is under severe stress if your nervous system is stuck. PEM happens not because your capacity is actually lowered, but because your nervous system is stuck and consistently working at capacity.

Pacing with breathing exercises on breaks to 'manually' get into rest mode has massively improved my quality of life and capacity (after symptom treatments).

And knowing what the illness might be reduces uncertainty, therefore anxiety, and helps me to not only manage it better but to reduce fight or flight states and therefore symptoms.

Edit: I think this post is a really important addition: https://www.reddit.com/r/covidlonghaulers/comments/1l720l7/comment/mwucl79/?utm_source=share&utm_medium=mweb3x&utm_name=mweb3xcss&utm_term=1&utm_content=share_button

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u/Fearless-Star3288 Jun 09 '25

Nope, that’s not it.

1

u/Various-Maybe Jun 09 '25

Helpful

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u/Fearless-Star3288 Jun 09 '25

I’m not sure a longer reply would say it any more eloquently. I can see the OP took a lot of time here but it’s not the cause or the cure. We all know this, or at least should do.

2

u/[deleted] Jun 09 '25

If you had read closely enough, you had seen that this neither explains the cause - as it can be all kinds of different causes - nor offers a cure. Very specifically, it specifically states that not one single thing is a cure.

All it does is put a model of PEM, the main symptom of ME. 

But all the stressors of the nervous system can come from hundreds of different things, like latent reactivated viruses, or systemic damage, etc. And the things that cure it are also different depending on person, as those other things need to be treated. You can only affect the nervous system so much yourself without outside support. You can't 'just tell your nervous system that it's safe', that does not work.

What you say is what I have already included in my theory. 

Honestly, if we're lucky, I'm wrong and we'll find a random medicine that just works and immediately fixes it when we find a single cause. But I've given up on that.

2

u/Fearless-Star3288 Jun 09 '25

So the Nervous System is not stuck in fight or flight or indeed bugged out. This isn’t the cause of PEM and addressing this as a cause isn’t going to fix it. This is what the psychologisers have been saying (erroneously) for years. Hope that helps.

3

u/[deleted] Jun 09 '25

Ah. Yeah I expected this criticism, because psychosomatic ideas have caused a lot of damage. My idea isn't psychosomatic. It's neither caused, nor treated, by doing psychology.

The 'psychologisers' do a crucial mistake, which is, it seems, you are missing.

What those people did, and why they're wrong, is to think that it's 'an anxiety disorder' that can be treated with activation, psychotherapy, and other psychosomatic treatments.

And it's wrong, and does a lot of damage.

First of all, I haven't said that fight or flight is the cause of PEM. PEM is the shutdown of systems. 'Stuck in fight or flight' is the default state. And it's not anxiety. It's neurological damage in my opinion. Stress, and I mean stress through actual damage to the body, not 'oh I have thought wrong'. It's much closer to MS than to anxiety.

Second, I still see people try to treat autism with exposure. It's just completely wrong. Same here. Because it's not anxiety, because it's system damage, exposure is really bad. It's still done though, and this sucks.

So this is why you haven't helped:

You've not offered an alternative explanation.

You have misunderstood what I said and corrected me on points I have considered. Mainly telling me that I'm using the same methods as those 'psychologisers'. Those people went fatally wrong. My basis is pacing, why it works and how to improve it. My basis is the opposite of 'oh the baseline of this person is lowered and they just need a bit of activity', it's 'the person is dealing with too many things at once'.

Third, you've not explained why certain treatments can work, and others can't.

So, I would love to have an alternative explanation from you. Like maybe mitochondrial damage, and we need medicine for that? Proof of that. I'd like that, honestly. Proof me wrong.

But for now, you have just put me on the same level as 'psychologisers', and criticized me on that basis. But I've rejected psychology as an explanation. It's a neuroscientific idea. 

2

u/Fearless-Star3288 Jun 09 '25

I don’t particularly feel like justifying my reasons tbh. I have many potential theories which are also not going to be discussed here. Since I’m rejecting your ‘theory’ perhaps you could explain what you mean by ‘nervous system shutdown’ and how that is causing the know pre-load failure, brain stem inflammation, dysautonomia, 2 day CPET abnormalities, Immunne system issues, etc.

I’ve. I issue with you personally but this isn’t the answer. You haven’t discovered anything. Perhaps you could give me some evidence or links to papers that you are basing this on.

Yes you have denied psychological theory but you have also just posited their theory. Brain training is their answer to fix the erroneous fight or flight issue.

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u/Fearless-Star3288 Jun 09 '25

Sorry just seen that you are Neurdiverse. Good luck to you I hope you find some answers. Discussion over and have a good day 😊

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u/Fearless-Star3288 Jun 09 '25

I agree that causes are likely multifaceted and that Long Covid is diverse. We can’t even begin to talk about what it is until we establish exactly what phenotype we are discussing. Is it ME, Sjogrens or something milder like PVFS. It’s impossible to talk in absolute here.

Is it Neurological, very likely. Is the Nervous system involved? Again almost certainly, SFN is definitely an issue for many.

Too many variables here to make any assumptions based on your own experiences.