I don't consider M.E/CFS affected people when acting as groups, to be above criticism. The group behaviour of M.E/CFS affected people in relation to XMRV has been in large measure both anti science (partialism) and deeply flawed from a public relations perspective.
You are making sweeping generalisations again... So we aren't a community, but we do act in groups? And we act irrationally and unreasonably in groups, because we are anti-science? Like 'pack' behavior? And we are deeply flawed. You have interesting views on the ME patient community.
I'd like you to demonstrate this 'anti-science' to me please because, in my opinion, this is a very scientific forum where we rigorously discuss, assess, scrutinise, criticise, employ and utilise the science all the time.
As for public-relations, we aren't a public relations company. We are patients with a disease. So it is up to us, as individuals, how we wish to represent ourselves in public. And your opinion about how our behaviour would be assessed, by a public relations manager, is a subjective view for starters, but it is also an inappropriate way to assess what patients are trying to achieve, and is irrelevant to me.
When people are trying to achieve fundamental change in society, they don't always worry about how they
superficially present themselves.
Are we trying to achieve fundamental change? I think we are, specifically in relation to how our disease is treated by the establishment.
We are a minority group that is treated abysmally by the medical establishment and the government.
When other groups in history have achieved change, they have often done so by making a nuisance of themselves, and not with a glossy public relations exercise.
For example, when the suffragettes were campaigning to get the vote, they weren't thinking about if they looked presentable enough to get on the front cover of Vogue everyday, or whether their actions might upset some establishment figures. They were purposefully making a nuisance of themselves. I expect that a lot of people, especially men, thought that they were going about things in the wrong way, and making too many enemies, and doing themselves a disservice by ruffling so many establishment feathers. But in the end, it was by loud and disruptive action that they achieved results. This has been repeated throughout history time and time and time again.
Waverunner's contention is that the involvement of expert opinion, which by its very nature has to be accepted with a degree of deference - otherwise there's no acknowledgement of the 'expertness' - would assist forum discussion.
Well, you can go through your life differing to authority if you want to. That is up to you. Others choose to scrutinise authority and to challenge it when appropriate.