Hi all ... I don't know a thing about CFS, so I'm only going to address the question of whether scientists (pardon the multiple quotes) "should" be "led by" or "swayed by" patients. I won't be strident because I think I understand the author's concerns and I want to appeal to a yet deeper level of scientific thinking.
I beg all to consider (1) that not all reality has been discovered yet by science, and (2) that if the goal of healthcare (and thus medicine) is to improve people's well-being, there's value in listening to what patients say about their condition.
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Re (2) - and on this one I'm pretty confident – if the goal of healthcare is to improve well-being, then only one party can say whether it's working: the person who's being well, or not....
