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

[Utsikt]

My point is, some people can take and listen to valid criticism well, and some can't. I'm not sure we can change them.

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.

 

[bobbler]

I have had similar experience in my dim and distant past working life. We had one principal who set up a system for lowly lecturers like me to air our concerns, and, even if they didn't act much on them, I was listened to carefully and not penalised. Few if any others took part.

Then we had another principal who was so clearly insecure that she reorganised departments to force all the intelligent department heads into redundancy, and replaced them with weaker people who wouldn't challenge her. When I raised concerns she couldn't get rid of me fast enough. At least it got me a clear passage to ill health retirement which I needed by then.

My point is, some people can take and listen to valid criticism well, and some can't. I'm not sure we can change them.


I disagree. We should, of course, base our criticisms on the problems with the research, writings, statements we are criticising, not on attacking the person. We should be free to say something is rubbish, or unscientific, or illogical.

Our rules already don't allow personal insults directed at anybody. It's good to be clear and polite, but it's also important to be honest, whether we know the person whose work is being criticised is a member of the forum or not.


Yes, if researchers haven't met distressed or angry patients before, it may come as a bit of a shock, but they are researching things that directly affect the lives of sick people, not counting cockroaches. We should be free to show that distress or anger (within forum rules), and to be very critical, if someone is using us as cannon fodder for bad research, or getting funding and promotion by using our suffering to their own ends. You know you are, BPS people.


Indeed. And block any of us who dare to ask questions.

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

 

[rvallee]

I don't think that would necessarily be true. It might be more so the case that they prefer or are simply more adapted to a different stance altogether: Instead of someone writing a critique, that person simply shows what the problems are by doing the same work but doing better by improving previous flaws and as such making the previous work less relevant, not by pointing out flaws but by doing better.

(I'm not suggesting that this is how things should be done or that this forum should change.)

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.