This sounds like a recipe for career bureaucrats to delay action and fragment the patient population into small, disenfranchised subgroups.
I'm not arguing about the science, I'm concerned about the administrative take-home message. What I saw at the end of the workshop showed the transformation already in progress. Experienced players of bureaucratic blood sports can play this hand blindfolded.If we want to find solutions, then we need clinically homogeneous samples. That means subtyping is rather important.
When you have studies claiming that ~2% of the population have CFS, you realise that studying these groups as if they all have the same pathology is probably a mistake.
hmm, ancientdays and I just said the opposite. I agree that "small, disenfranchised subgroups" of people with actual ME/CFS with PEM and cognitive dysfunction is a bad idea.
I was just thinking that stratifying the CF-plus-ME population that many groups like to study under the title of CFS would be good because then you could differentiate the CF from ME/CFS instead of having ME/CFS swallowed by the larger CF population. Or in some populations it would be obvious that there were no ME patients when the study authors wanted to say their results applied (or, since they failed to adopt the new standard, they might actually be properly ignored from reviews and meta-analysis).
And as Klimas said, there might be different treatments needed for various subgroups.
I do agree that campaigning together and keeping our cohesiveness (such as it is) is a strength we should attempt to reinforce and capitalize on.
edit: and I agree with heapsreal, too!