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Not totally unique. I've read posts by a few other PWME who were continuing to do bodybuilding at levels way beyond my bike rides. I think outliers like myself are useful for ruling out some theories about ME and PEM. It's not absolute ruling out, since there could be possibilities where a...

I wonder whether this pathway is the one that gives the "hurt all over" feeling during a flu infection. It might also explain why LDN works as a pain blocker for some people, but not others. By this theory, would consuming MSG make chronic pain worse?

Would an anti-deconditioning mechanism make sense as a survival trait? If a body does face situations where it is unable to move much (illness, hiberation, etc), the ability to emerge fully functional would boost survival. There might have been some crippling diseases in early history that...

My example was that I could do a 40 km bike ride in hilly terrain without triggering PEM (after getting accustomed to long rides), but climbing a few steps up a ladder (unaccustomed muscle usage) or washing a window (also unaccustomed muscle usage) for maybe a minute would trigger PEM. Based on...

I was disappointed by the article. I can imagine a pompous professor stating that "Brainfog is just a lack of ATP in the brain cells, no need to look further, just send me a Nobel Prize". There are plenty of other possible theories. I wonder whether this theory is reasonably easy to test by...

We still don't have the right theory for what's going on, but instead have lots of theories that are wrong, but people are stuck on because those theories fit their individual experiences. I mostly dismiss theories based on mitochondrial dysfunction, because my experience is that I'm not seeing...

I never noticed a stimulating effect from coffee either. Really strong coffee would make me jittery (and have an upset stomach), but not more awake or energetic. Weak, with milk, it was relaxing.

There should probably be a "some" in front of "people". Deconditioning might cause some symptoms in some people, but not all. Physical activity doesn't seem to have any effect on my lethargy, brainfog, or perceived aches. Things that make my symptoms worse (typically food intolerances) reduce...

If you're interested in caffeine's effects, I came across this today: https://www.sciencedaily.com/releases/2025/05/250529124625.htm It's about caffeine's effects on brain activity during sleep.

There was a recent discovery about t-cells resident in the brain, producing IFN-g, so that's more complexity.

I managed to get a prescription for cyclosporin (strong immunosuppressant). It had no effect on my ME symptoms. If we need immunomodulators, I think we might need one that blocks a very specific pathway, rather than full immune suppression. I rarely got significant viral infection symptoms...

Caffeine didn't have an effect on my ME in the first maybe 15 years, but then it started giving me worse ME symptoms (lethargy, brainfog). Then I had to give up chocolate too. Even decaf and white chocolate contain enough of the xanthines to affect me. So sad.

Why would one of these be labeled a hepatokine if it's also produced in other organs or tissues?

Definitely. If the system wants to focus on providing for easy patients, they should also provide an advocate for the patients with difficult medical problems. A patient who can't deal with bureaucratic difficulties on their own should be able to request assistance from an advocate: one who...

I think it would. An over-response could be due to increased inputs, increased sensitivity to normal inputs, increased sensitivity of downstream systems to normal outputs of the immune cells, or some malfunction not yet considered (maybe a protein is being produced at normal rates, but that...

Less likely, but not impossible. I had several temporary full remissions in the first few years of my ME, but managed to get another couple in maybe year 10 or so? The factors of a complex feedback loop can change the opposite (beneficial) way too. It would be interesting to know whether any...

That's certainly my belief for physically-induced PEM: muscle cell damage triggers immune activation, which somehow triggers glial activation, resulting in "sickness behaviour" symptoms. Cognitive exertion triggers the glial cells more directly, resulting in a shorter delay for PEM. I...

I see it in engineering terms, such as an electrical component shifting its value slightly, which in turn shifts a feedback loop to being more positive. In humans, maybe cell walls change their properties (molecular transport, etc) over time, or with repeated immune system activation...

I'm not supporting microbiome changes as a core part of ME's mechanism. However, I've experienced multiple ME-symptom-severity responses to foods or to what seemed to be dramatic changes in my microbiome, so I am interested in theories that connect the two. I think that if my gut was magically...

Aren't IFN-g levels in the bloodstream found to be normal in PWME? If so, IFN-g's effect on cells isn't likely to be responsible for ME's body-wide symptoms. IFN-g levels at specific brain cells might have significant effects on body systems.