I think I have to explain what it is that has irritated me about Ruscetti's comment: and it is, as often these things are, about deep problems around medical science and the relationships of those claiming 'scientific' authority and the poor saps desperate for help (the poor saps? That's us, sufferers and carers, of any disease, but especially here of the devastating physiological dysfunction that gets labelled as 'CFS'. I'm being ironic about the 'saps' comment).
Relationships with scientists in 'CFS' have been marked by a constant expectation - demand- of deference by the patient group towards scientists (and the charities), and an often viscious resentment, though expessed most often through condescension, when that doesn't happen.
This - I would argue - is part of the fallacious claim to scientific authority whereby people are expected to suffer on trust all sorts of claims made by people claiming this.
Over here in the UK, Simon Wessely is part of a group called 'Sense about Science'. The ostensible remit is to persuade the public to be more 'scientific': however, their whole strategy for this is to 'accept peer reviewed papers as gospel' full stop. What they fail to realise- or maybe are trying to ignore- is that, once people become more 'scientific', they become more analytical, and claims to authority ("Accept our word because we say so. We're scientists) become more difficult to swallow without critical reflection and interrogation, and often then contestation. It's inevitable, and for some in power, its unbearable.
The other issue to consider here is that CFS as Carruthers et al have defined it, is such a terrible disease, that people are going to want to engage with scientists working on it to bring about a cure if possible [and removal from the quasi-religious 'INYH' belief system definite]. They do that with other illnesses also (remember Lorenzo's oil for example?).
So, we have an increasingly knowledgeable (dare I say 'scientific'?) bunch of sufferers and supporters (similar to AIDS) attempting to engage with 'scientists' (add medical doctors to this), some- many- of whom have forgotten that patients are not there for their careers to be built. TO make it worse many 'scientists' have been - mmn- very mistaken in their claims about 'CFS', time and time again, and the CFSers know this.
Ruscetti's comment seemed to be a dig at a patient population that has every right to enquire of the good scientist The laughing in the audience seems a little too apparently deferential for my liking, in a situation where deference is encouraged or coerced almost to the point of self-destruction by certain parties: the exaggeration itself irritatingly banal in the circumstances.
If Ruscetti ever reads this exchange, I hope he's intelligent enough to understand at least the sociology of science that lies behind my comments. But, with good reason, I've become always fearful that scientists are so busy buying into the construction of CFS patients, at least, as recalcitrant, that he may not understand why some of us will be irritated by remarks like that (and some of the other clangers dropped this week alone.)