You are turning down the debate into a moral question. I certainly don't consider the UK medical researchers as "evil", which is a moral claim. But I'd be happy if money were given to biological research after years of fruitless psychiatric trials. We just want good sound research.
I was simply following the logic of what other posters presented –‘evil’ wasn’t my choice of word.
Are there other diseases that have been dismissed to the point ME/CFS have been?
Isn’t that just an ‘oh poor us’ excuse. Sectarianism amongst patients is obviously a harm to our collective interests, so when organisations take different directions the only thing to do is ‘suck it up’ and acknowledge the validity of choice that patients are taking. There’s no requirement to ‘agree’ but using words like ‘evil’ only turns the whole thing into a war of religion.
I partially agree, our anger is legitimate, but if we express it directly, it will confirm our psychiatric nature to those who think ME/CFS is somatization. But to a certain extent, I don’t think these people want their opinion to be challenged, they are sticking to their point of view whatever we do endorses it.
The point about a scientific collaboration is that there is no faceless “these people” – everything is attributable and positions have to be justified within the context of the collaboration. Of course it may not work, but unless it’s tried, we are merely left impotently shouting across walls.
Victories of minorities have been won by different means (American civil rights, defeat of apartheid, fight of Aids sufferers) where different approach (peaceful or more violent) were used. But what is sure, one has to be firm on what is acceptable or not, and a too close collaboration with the other part (when the other part is not willing to compromise) is never useful.
Medical research is no place to play out civil rights issues, and the justifiable anger thing only leads to Gaza-isation – choose which side you identify with most and you’ve got your justification for whatever insanely murderous action you want. So ME is a bum rap – welcome to the world, we are not Apartheid era Black South Africans – a majority not a minority ! Neither are we collectively African Americans (I’d like to see the stats that show ME patients being x times more likely to be in jail) and as for AIDS activism –one can barely tell anything about that bit of history for all the self serving hype about a few individuals and groups which wipe the ranks of quiet diligent researchers and activists entirely from the story.
To the world at large we are and will remain, just another patient group, we can argue that certain medical specialisms have undermined the level of public sympathy we might otherwise have enjoyed, but is anyone going to listen – probably not. To progress we need to influence medical research, not merely via isolated one off studies or grand single focus institutes, but as part of the broad spectrum of medicine. The picture of ME as a single disease is no longer tenable, solving it for everyone who has a tentative diagnosis of ME/CFS under whatever criteria, will require interest from a broad range of specialisms, which is potentially what initiatives like the CMRC are able to deliver.
