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This topic is of interest to me. From memory, rare diseases found in apparent ME/CFS patients included a case of glycogen storage disease, multiple cases of muscle ion channel disorders, multiple cases of mitochondrial disorders, Parkinson's disease, a congenital structural cardiovascular...

Topol is supportive of ME/CFS patient and activists.

I have a primary empty sella.

Too many patients go along with this kind of thing.

In one of his videos, Jarred Younger has said that his brain imaging studies have found differences in a region that he described as "center of suffering" or something similar. Maybe this nonspecific feeling of suffering is exactly where it comes from. Speculating, one could say mild brain...

It's no wonder medicine is not making progress with poorly understood illnesses. It is too busy making up BS to mislead patients to hide the fact that the illness is poorly understood. If there was a collective act of admitting this uncomfortable truth, effort would then go into actually solving...

It's a mood symptom, not a physical symptom like dizziness, fatigue, or inability to concentrate, or pain. But it's also a kind of pain or sensation of suffering, not localized to any place in particular. That's considered dangerous to say given the psychologization of ME/CFS, but as I said I...

Yes and no. What I'm describing is what happens a bit later, if I continue. If the activity provoked intense symptoms I would stop, but if the symptoms are mild I tend to continue. When continuing, at some point this additional symptom of dislike for what I'm doing tends to appear.

Usually cooking, using the PC for mentally demanding tasks, or spending time with other people with lively talk. But I don't think it's activity specific. It makes no sense to begin disliking something that half an hour ago I was enjoying, when nothing happened other than the passing of time.

This observation doesn't prove BPS ideas right, it proves them wrong. I didn't learn to feel bad about an activity in the past, with the feeling inappropriately persisting and keeping me from doing things, and therefore causing an impairment in ability to carry out activities. It shows that I...