I think it's disgusting that it's seen as acceptable to blame patients and their representatives for the piss poor way that CFS is being dealt with. But I also do think that it's true that CFS patients seem like angry nutters to a lot of researchers.
CFS patients are having to deal with a lot of strains - often seriously disabled and utterly dismissed. It's not surprising we're rather highly strung and personally invested in CFS research. Rather than tell patients that they need to learn to behave before they'll be treated properly, the MRC and others should be ensuring that more is doen to make sure this difficult condition is dealt with properly, even while patients are so divided and on edge. It seems like everyone accepts that CFS patients are badly treated by the medical system, but it's also thought that they should not respond negatively to that, and it's acceptable to blame them when they do.
I don't know what the best way to move foreward from here is. As ukxmrv said, I think Mark's post is a good introduction, but I also understand why people who've been suing those techniques for some time will be find the endless need for obsequious grovelling to be something of a strain.
This is ludicrous, in what other field of medicine or anything else for that matter could people be treat so badly? Disbelieved, mocked, belittled etc...... and at the same time offered no support or real treatment, then when they respond, be told it is their response that created the situation.
Its like going into a restaurant and being served some inedible pig swill with maggots in it, then when you have dared to complain, you are told had you not complained you might have received a better meal.