If proper sleep does make a difference for just a few PWME, then it could be a rare mechanism that can reduce that symptoms. There could also be people for whom proper sleep fixes a completely different symptom.
Maybe it also causes some changes in brain function? Brain function seems to involve signalling via waves (chemical and EM), so music might affect those. That in turn might affect whatever is malfunctioning in ME brains.
I think that’s pretty common. People have called it wired, adrenaline rush etc.
Interesting. Because the exact same conditions. Slightly pushing over waking up next day etc. give me great mental functioning, which when mild I interpreted as improvement. But the more severe I got I realised it was accompanied by tremors and worsening of some symptoms.
Lowered intelligence, drop in IQ level. But I generally meant that ME/CFS does not suggest brain damage or a neural development disorder. The cognitive problems are disabling but more vague and diffuse in nature, such as brain fog.
Like Jo said, there's a lot of nonsense in the literature about central sensitisation. The problem is also not just that the signal is amplified (when it is there for other reasons); the signal seems to be always on and to a stronger degree than in many other diseases.
There must be some nervous system pathway that makes us feel symptoms (fatigue, malaise, brain fog, needing to lie down flat) when we have an infection or other disease. Whatever is causing ME/CFS, it must be activating this network pretty hard. Given that we have no convincing evidence of peripheral pathology that might activate this network in ME/CFS patients, the suggestion is that the pathology lies in this network itself. This would fit with genetic evidence pointing at the brain, neurons and synapses (rather than at a peripheral pathology).
My hunch is to follow Ockham's razor, keep things simple, and only add things if we really need to. At this point, I think there is strong evidence of an immune trigger, but not necessarily of immune pathology maintaining the illness.
So if I'm understanding you correctly doing a specific very task that is largely cognitive in nature often let's you get normal sleep and you wake in a way akin to healthy people, whilst pretty much all other tasks give you "ME/CFS unrefreshed sleep, foggy brain and ME/CFS symptoms the next day". So if ME/CFS was some sort of "neurological sleep-reparation process dysfunction" there's some process that let's the "neurological sleep-reparation process dysfunction" work normally for a bit.
Yes, many patients also report early muscle weakness/cramping/lactic acid feeling that seems similar to what Ramsay described in his descriptions of ME. Anecdotally, severe patients also seem to suffer from muscle weakness that does not appear to be due to deconditioning.
My muscles get really weak when I’ve got PEM. To the point that moving a fork with food to my mouth becomes a difficult task.
Good point. It feels like its my muscles, but that might no actually be the case.
I don't think it does; merely wanted to suggest how it leaves room for it.
For me it feels more like a “brain” or “energy” limit than a muscle limit. Take an example of “paralysis”-like which happened to me at one point when extremely severe. The problem didn’t feel like it was weakness or cramping, it was subjectively that I was unable to concentrate or have the energy, to properly give my brain the signal to move. So in a sense my it felt like my subjective stream of consciousness was unable to properly get the body to do what I wanted it to. Almost locked in like.