That's a philosophical argument, and most people would say an entirely reasonable and fair argument - but it doesn't translate into pragmatic advocacy. Fairness and reasonableness are not unconditionally on offer - no one is compelled to listen to M.E/CFS affected people, and no one is obliged to accept an argument from an M.E/CFS perspective. We can construct all sorts of 'we shouldn't have tos' - but effective advocacy, which is necessarily a pragmatic process, requires all sorts of 'have tos'. Flash mobbing a Daily Telegraph bear pit doesn't stike me as a smart way of engaging 'the enemy' for whom it just confirms existing prejudices - litany of "How do these fatigued people have all this energy ?", "How do they have all this free time ?", "Aren't they just a bunch of dole cheats ?" etc.
But flags have been waved, spleen has been vented, perspectives demanded to be taken seriously, and no doubt many of the participants have relieved themselves of something or another. But let's not pretend it has anything to do with achieving something meaningful - it's just a 'pile on' mobbing with a wholly internalised rhetoric dispalyed to some uncomprehending observers, most of whom have had the view that 'M.E/CFS patients just need to get a job', overwhelmingly re-inforced.
I've never liked pragmatism, and now that I've read more of the pragmatic justifications which have been used for a lot of the quackery which surrounds CFS I really hate it.
Most people with CFS don't see themselves as advocates, but instead just as people, some of whom will want to express their views some of the time. I'm quite happy to post comments about Romney's views of 47% of Americans, the value of DJ Fresh's pop records, or the costs and benefits of free-trade, not because I'm advocating for any particular position, but because I think that discussion and debate are valuable in and of themselves. It helps me clarify and develop my own views, as well as helping me understand the views of others.
In the same way, this thread was just people discussing an article. It wasn't people planning some assault, or thinking that they were hard at work achieving some great improvement in the way people viewed CFS. Certainly, if one were to choose how to prioritise one's time in the way which would be most likely to improve the way CFS is treated, one would spend no time at all considering Pemberton or what he thinks. But it's still fine for some people to just feel irritated by the misleading nature of his work, and want to explain why that is, even if doing so does not achieve anything.
re the whole: "Wow CFS people sure have a lot of energy to explain how poorly treated the condition is, lol!"
A while back I was reading about the way in which ECT was combined with really high doses of various drugs, and people being kept unconscious for months at at time - unsurprisingly leaving people feeling rather worse for wear. One article I was reading was focusing upon a patient who seemed pretty ruined and was only semi-cogent, weeping, etc. The doctor defending the medical profession explained that while he had a great deal of sympathy for her, it was important that they stick to the high standards of medical research, that they required peer reviewed evidence, etc.
In another article, they talked about a former patient who was giving speeches, taking part in debate, citing articles to support her arguments... the final comment was from a doctor saying that the quality of her arguments indicated that the treatments she was subjected to did not do her much harm.
If one is a part of a group which people feel it is acceptable to look down upon, then they will always find excuses for legitimising their prejudices. There's not much that we can do about that.
