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Maybe we should be treating chronic fatigue as another kind of physical fatigue puzzle, rather than taking the Hummingbird route of looking down our noses at them and telling them that if they don't have PEM they don't properly exist as a clinical entity."
This misses the point. If you do not have PEM you don't have ME, like if you don't have high blood sugar you don't have diabetes, but it doesn't mean you don't have a disease only that it has not been found yet.
Chronic fatigue is a symptom of many illnesses but if the diagnosis stops at that by calling it CFS, then people will be harmed. They could well have something treatable, or deadly or which needs changes in lifestyle to resolve. Fever is common to all bacterial infections but if fever was the diagnosis, antibiotics would never have been discovered.
My son was very fatigued and was told exercise might help and it was left at that. His sister with similar symptoms was lucky enough to get a blood test for coeliac disease (because her GP had had a flat mate with it!) so he was then tested and it was discovered he was coeliac too, he changed his diet and is now fine.
My mother's post flu fatigue turned out to be an aggressive cancer. My friend had cerebral palsy and was often exhausted after exertion simply because it took so much effort for her to move a reluctant body.
Any patient with fatigue needs to have it investigated properly and, of course, many people are exhausted because they actually have exhausting lives where social help would make a difference.
On a different note, when the PACE trial started, the participants were so cherry picked - I think it was something like 640 from 3000 names put forward and with no explanation except that they were the only ones suitable - that I expected about 80% to recover in the proper sense of the word.
I wonder if it was because they could not fudge the people in the clinics the way they could in a study they controlled themselves.
Mithriel
