u/swartz1983

I thought I had already posted this previously, but it doesn't look like I had. Very interesting review which explains the various types of "neuroinflammation". I'd definitely recommend reading through it (or asking an AI tool to summarise the main points).

Just wanted to discuss this comment (as I can't discuss on r/cfs), as I see j_spru is a mod here:

https://www.reddit.com/r/cfs/comments/1r6mqm6/comment/oqr31di/

I think you misunderstood my comments, or we didn't get a chance to discuss. I don't have any beliefs about ME/CFS (dogmatic or not)...I just look at the evidence and see what it says.

Currently the evidence shows that both stressors and viral infections are precipitating factors, so it's certainly not true that "stress is the one and only cause of me/cfs". I'm not sure where you got the idea that I have that dogmatic belief. Sorry if you got that impression.

As for "evidence of biological or phisiological findings": there are some biological/physiological findings that have been replicated, such as lower cortisol awakening response, low HRV, low NK cytotoxicity.

We discussed mitochondria, and you seemed to think there was proof of mitochondria dysfunction, even though you admitted that none of those studies have been replicated. I used to think there were mitochondria dysfunction, but in the last year or so I changed my mind. So, I'm not sure if I any dogmatic beliefs.

Just checking through my emails, and I see in 2021 I emailed Karl Morten discussing potential research related to mitochondria, as that seemed to be one of the most promising findings, and I offered 10k of my own money towards funding. However I later looked further into the research and realised that it wasn't quite as promising as I had thought, so redirected the funding elsewhere.

Anyway, perhaps you should base your opinions/beliefs on the evidence, rather than the other way round. Changing your opinions based on evidence is good.

Also bear in mind that it is well established that stress causes changes in mitochondria (see reviews by Picard for example).

PS you seem to be a fan of r/cfs pile-ons. This one was particularly ridiculous as they screenshotted an out of context part of the discussion (which I then edited to clarify). I wasn't saying that pacing is bad, just that continually pacing and resting too much and avoiding activity can result in becoming bedbound. And then there's all the ridiculous and nasty misinformation and attempted doxxing, saying I make money or sell books (I don't do either), or that I recovered after just 6 months (I didn't, but it wouldn't matter if I had), that I used brain retraining or push it (I don't do either, and warn that it's a mix of science and pseudoscience). Overall r/cfs is highly toxic and dangerous, and I'm somewhat suspicious of anyone who even posts there, especially in a really nasty toxic thread like this.

Just continuing on a conversion from a locked thread, where /u/_Melissa_5513 said that although stress makes it worse, it isn't the main cause.

I would argue that stress does appear to be the main cause, but this includes stress from infections (which activate the HPA axis and ANS), as well as from the illness itself. It also includes the situation itself, e.g. insufficient activity.

If we look at the replicated evidence, we see that stress is consistently found to be a precipitating factor, the stress system (HPA axis and ANS) seem to be dysregulated, and treatments such as CBT and stress management do seem to be effective.

In terms of recovery stories, my own and the mod of this sub both found that reducing stress were important in going from mod/severe to mild, although that in itself didn't completely cure it. I also had to increase activity again, and motivating/positive activities were particularly important. I think the brain likely gets stuck in the low energy state due to chronic stress, and tends to stay there even after the stress has been removed, until you replace the initial stressors with non-stressful, safe activities.

I found that resting too much after removing the stress wasn't helpful. Of course rest is important during a crash, and in the initial states when there are still external stressors, but too much rest seems to be detrimental, as it can cause further deconditioning symptoms, stress from the illness itself, etc. These patterns also seem to be consistent among most (or all?) other recovery stories that I've read.