My partner for many years had CFS. She still does, only I'm no hero and we're no longer together. I didn't doubt the disease, but I didn't understand it either. A thread like this would have helped a lot -- perhaps there was one but I never saw it. I just heard vague diagnoses and medical scepticism. I think the figure about 1 in 10 GPs doubting the syndrome is likely understating the problem: it is one thing for a GP to believe that somebody out there has it and quite another to believe the person in front of you has it. I have experienced sceptical doctors myself (I had to be put on oxygen for 30 minutes after successfully proving to my sceptical doctor I had asthma, a far more banal and self-evident disorder). Perhaps healthy professional scepticism fails to be helpful with such a tricky disease as CFS. Or perhaps GPs need to listen better to patients' stories, rather than treating the body as evidence.

Just seeing a bunch of different voices say similar things helps illustrate what is the disease, what is a coping mechanism, and what is the person (for example, extreme cautiousness about activity being a coping mechanism rather than a frustrating personality trait). And understanding these things helps the other people in your life, because they're also coping, only they're doing it voluntarily, which means their experiences are different, their choices are different, and their compromises are different.

Some awkward facts that nobody wants to face because they don't fit: this is what science looks like when there is a discovery waiting to be made. This disease can teach us something we don't know about how humans work. You would think that would be enough reason to study it, quite apart from the folk who would like some help.