Where can patients argue with clinicians and scientists about bad science in ME/CFS?

It’s probably impossible. And that’s a good argument against contacting researchers. If they want to hear from us, they know where to find us.

 

I think there is a sense of if someone is in a conversation and then two plus people ignore you and talk in the third person ‘about you or your x’ ie ‘what you’ve done/choices made’ as if you aren’t there even if you are standing there it can feel rude. Like whispering behind someone’s back when they can hear you. And I’m dumb enough when tired to have not noticed people on threads and they are normally pretty good about it but do think if I’d known I’d have just at least started with their name if it was disagreeing with something in their article or a question etc

agree it shouldn’t change the content but if I knew someone was on the thread actually reading it then sometimes just changing the grammar to acknowledge that can read differently

I’m struggling to dxample but if I instead of replying to you here posted a reply about your post to someone else then even if it was because I didn’t realise you were there it can feel a bit objectifying (? Is that the right term?) vs if it’s the same frank reply but at least written giving that person openly the right to reply/being obvious it’s a debate

 

No kidding but this was a response Sharpe gave to someone criticizing PACE, I think it was about the reanalysis having shown that they cheated. He basically said: "well, if you don't like the results of this $8M USD trial, just do your own".

Not that it would matter if we ever did that and proved them wrong. They would simply reject the results, or find some other BS excuse for why they are right and we are wrong regardless. There is no amount of evidence that will bother them until it is their peers moving away from their stuff because someone found something, anything, that actually works.

But of course this way of doing things simply doesn't work. It has allowed an industry built on a GIGO process to create a mound of BS since there is only BS going in. And it suits them perfectly. It's just that most of medicine is fine with that, the institutions are incapable of doing their job and there is no mechanism for redress, accountability, or even basic representation. In essence, it is closer to an aristocratic model than a scientific one. Fashionable before correct.