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I agree. And reading it I find the order in which the sentences were composed into that paragraph insightful. I don't understand why the lines I have placed in bold - which relate to 'patient voice' - were placed where they were. They may have had a place as an important relevance as an 'and...

No indeed. Which sort of should make things more fixable. I note you posted in the MEA PROMS research and agree that it is important that we all perhaps are pushed to take some time to look at that one afresh, because it is one of the things that will directly affect treatment EDIT: most...

And @Trish Im a bit divided on this. I absolutely agree that those just wanting to plonk the same orthodoxy on it all need shifting out completely. It’s all smelling so so old fashioned and unfixable the way they are unable to hear or respect. On the other hand @PhysiosforME habe been...

To ask the obvious question - and this applies to UK as much too: of the professions that we've ended up being landed dealing with, which of them are actually taught this compulsorily at the start and then throughout their courses and vocational training? Is the issue that they are some of...

Yep they've made it seem like a country-based comparison rather than a condition-based one. And of course that is the classic reframe the set technique - look there are those who have the same thinking issue in the UK too rather than 'compared to what you'd expect from something that calls...

Interesting. So does Gerrard have the same worries when he is giving out Public Health information about eg STDs or heart problems or .. what else is it that he does as part of his job as a campaign area? I'd be interested to see someone posting a comparison of what he says on another area vs...

Are they that stupid that they don't realise the fact that their very first word was 'Some' [health services contact covid patients] makes the rest of what they say laughable BS unless they are citing a study proving that 'all the rest who didn't contact them had no long covid patients' Even...

I guess I just feel that this paper could have been an appeal for attitude-change. A rousing call to action for people to begin realising this could be an interesting area for them to develop science, instead of the same old 'patients just need our advice'. Based on the fact that: we aren't...

Here is the thing. I was one of those who probably still deep down doesn't want to think that it is just about never exercising again. And who as someone who was pretty athletic before never just cut it out, and would certainly be happy to add bits in. There were big differences between when my...

Unless the person feels ready to progress? I find the idea people think these things and say them in such a way so weird what do others think is the correct term on this ‘issue’? the idea there will be patients who ‘need help to progrsss’ ? Does this exist? I suspect it shows people who...

I like it. I slightly think of the Bechdel test too where it looks in films at whether they actually contain a female character that fulfils certain criteria rather than being a flunky. I wonder whether there is some inverted type of ‘score’ that could be given where papers get points for...

thank you :) I shall :bookworm:

Sadly the ethics issues have happened and ended up occuring under these stages. like retrospective studies taking cherry-picked 'records' from patients at their clinics. or studies that part-way through decided to drop the primary outcome that subjects' consented to, but carry-on regardless with...

I get why you think that but sadly when you think about how markets work it is actually the opposite way around. Doing research badly is both cheaper and quicker. At first the majority might be able to sit with their integrity and feel better about being better researchers until they find that...

except for the retrospectives done by those who ran CFS clinics it seems

and of course power corrupts. wherever you think it is placed, it either changes those who get it, or those who chase it play the game etc. I do think, however, that 'tooling up' and 'requiring responsibility' from those who are placed in any position where they are representative, whilst...

Spot on. And there should be a guarantee that null hypotheses or refutation of theories are as straightforwardly reported as one would expect. Otherwise it is effectively not only a waste of funding for that, but a step towards more wasted funding on the basis of things never being refuted or...

In my mind this sort of thing probably is a bit like that phrase people say about good law: where the best law means that most don't notice it I think that those who engage in good conduct might read the top-level asks on this and be a bit confused thinking 'isn't this obvious and what we...

But I like the idea that a charter could help this and spell out some of the things that have occured and do tend to occur that need to be avoided. I'm afraid that for various reasons relying just on that as a tick-box without guidance of what is expected will be picked up is insufficient. ie...

I just don't know much/enough layperson's stuff about this, so would be interested in anything you can point me to, whether it is articles or your own summary @poetinsf I think it is interesting to learn lessons from all sides of history and of course I'm intrigued to know more generally :)