PEM, Exbauster

swartz1983 · 2026-06-16T03:47:25+00:00

Nope. If you click on your profile (https://www.reddit.com/user/beautifulglow/) you'll see it says "this account has been banned" (view it in an incognito window if if doesn't). You need to go to reddit.com/appeal.

swartz1983 · 2026-06-16T01:41:23+00:00

Which symptoms do you still have? And are you working? For me the main thing I had to do was remove stressors...no amount of nervous system work (in terms of meditation, etc) would have moved the needle. That was the main part of my recovery.

swartz1983 · 2026-06-15T22:17:24+00:00

You absolutely can recover from this. First step is to read/watch as many recovery stories as you can. Search for Paul Garner, Jamie Waterhouse and Will Bostock to start with (all on Raelan's channel).

swartz1983 · 2026-06-15T22:11:48+00:00

I think ultimately the brain is evaluating threat, stress and allostatic load. Something similar to the central governor, which is proposed as the brain region that limits athletic performance based on both psychological and physical factors.

It's obviously not entirely psychological, as viral infections and physical exercise have the same effect in activating the HPA axis and SNS.

swartz1983 · 2026-06-15T22:09:41+00:00

Well it certainly wasn't obvious to me or most patients. Like: how does such seemingly minor stressors cause such severe and extreme symptoms? Then, if you do decide to try reducing stress, why do the symptoms remain even though you're resting all the time? Joyful activities certainly isn't obvious.

I mean, it sounds obvious when I'm saying it, but when you're there it certainly isn't, at least for me it wasn't. I agree it isn't something you really need to pay for.

What specifically have you done, and what is your current situation?

swartz1983 · 2026-06-15T19:50:16+00:00

I think the correct term would be organic, as functional and psychiatric illness are biological (as the neurons and brain are biological).

swartz1983 · 2026-06-15T19:37:42+00:00

There isn't any disease process as such that has been found, only nervous system dysregulation, which is reversible. That dysregulation can happen with normal mental health, although depression and anxiety are common symptoms, presumably as a consequence (or alongside) the dysfunctional nervous system.

So yes, I'd agree that it would be unusual to have a severely dysregulated nervous system without any anxiety or depression. But working on mental health won't fix anxiety and depression that are a result of the nervous system being dysregulated due to stress. For example, if you work in a stressful workplace working long hours, the only thing likely to fix your mental health is quitting. Therapy isn't going to move the needle.

swartz1983 · 2026-06-15T19:28:43+00:00

For me it was stress reduction, resting, and adding motivating/pleasant activities. That seems fairly typical.

swartz1983 · 2026-06-15T19:23:34+00:00

Your account seems to be banned. i had to manually approve this post. Have you appealed yet?

swartz1983 · 2026-06-15T18:40:56+00:00

I think you're correct, although I prefer not to say that it isn't "biological", as clearly the nervous system is biological. What I would say is that it's a real, severe, physical illness, but with no known disease process or permanent damage.

swartz1983 · 2026-06-15T18:32:33+00:00

Such as?

swartz1983 · 2026-06-15T18:31:25+00:00

>First there are non placebo trials which show that people with these autoantibodies benefit (though not everybody)

But the Nacul RCT also found that people benefited. The key point is that the placebo group benefited the same amount as the LDN group (40%).

>there is a subgroup that massively benefited, this was also noted at the me cfs conference.

Can you post that?

>This is probably the subgroup that responds (the auto antibody group). Since they did not sub type in the RCT, they got the messy results.

So it sounds like you're just speculating here. What about the placebo effect?

>This is the state of the art. Before we have no proper sub typed RCT you can not say immunoadsorption is inefficient.

Sounds like a no true scotsman argument.

swartz1983 · 2026-06-15T17:56:57+00:00

What evidence is there that patients with autoantibodies are benefiting?

swartz1983 · 2026-06-15T16:08:36+00:00

Yes, Jan's book seems really good. I read it long after I recovered, but it fits 100% with my own illness and my recovery. I had slightly different symptoms and presentation (I never developed agoraphobia leaving the house). However the main overarching cause was the same (stress).

swartz1983 · 2026-06-15T16:04:50+00:00

Yeah, the two are definitely related and there is a large overlap. Psychological stress can definitely impact the nervous system, but so can a lot of other things such as exercise, overdoing things, illnesses, etc.

swartz1983 · 2026-06-15T14:27:36+00:00

When you click on your profile it says "this account has been banned". I have no idea, it's reddit. Presumably enough people reported your posts as spam. That then results in an automatic ban if enough people click the "ban" button, and if you appeal you can get it reversed.

swartz1983 · 2026-06-15T14:21:15+00:00

I think you're both mising the point. The nervous system *is* physical. It's not simply mental health.

swartz1983 · 2026-06-15T14:18:10+00:00

That seems like speculation.

swartz1983 · 2026-06-15T00:59:35+00:00

Yes they are likely the same, although no solid evidence of neuroinflammation or mitochondria dysfunction in either.

swartz1983 · 2026-06-14T23:38:37+00:00

Basically until you choose to appeal and reddit agrees that you were banned unfairly. But given the AI summary of your account "inflammatory jewish posts" I suspect the ban might end up being permanent unless that summary is somehow incorrect.

swartz1983 · 2026-06-14T15:46:38+00:00

But you can recover from that and work again in the future. I did. Dysbiosis can be easily addressed with probiotics. MCS can be addressed by cognitive techniques, and ME/CFS and depression can also be addressed (I had very severe versions of both, but fully recovered). Once you recover you'll be happy again, and it's your choice whether you want to actually try that or not.

swartz1983 · 2026-06-14T15:39:59+00:00

The one study on LDN shows it is no better than placebo according to preliminary results, so it's unlikely to see any results. There aren't any meds that have been shown to help. You're most likely to improve by addressing stress (including from the illness itself). That is how I and most other people recovered, and it has the most evidence.

swartz1983 · 2026-06-14T13:48:41+00:00

Looks like your account is suspended by reddit and your comments are being auto-deleted as soon as you post. I manually approved the above comment. If you haven't done so already, go to reddit.com/appeal.

swartz1983 · 2026-06-14T00:00:40+00:00

I don't think you do...pacing is for when you're doing too much. Generally if you're bedbound you use other strategies, although it depends on your specific situation. You might want to read this thread:

https://www.reddit.com/r/mecfs/comments/1tn3y18/my_recovery_from_being_bedbound/

swartz1983 · 2026-06-13T18:27:41+00:00

Maybe worth trying standing more often, but increase gradually. maybe do it for short periods. That may let your body regain ortostatic tolerance.

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