More like 'the hypnotism really works (for fear of heights, certainly 'on paper') but it turns out they had a balance issue (say Ménière's disease...
And how on earth is this PROM going to identify what any clinic is 'doing well'? I'm very familiar with benchmarking and passing on/exchange of...
From MEA press release (my bolding): "Well-developed assessment tools that represent people’s experience and produce robust, good quality...
I suspected it was based on 'rolling wave'. I've tried googling but there is so much on it being a type of agile planning that I've no chance My...
100% agree on the terminology. It seems one of the most straightforward and fair asks for us to fix to get a terminology that does what it says on...
Another thing that strikes me as worth looking into / considering , having read the Crawley et al (2013) inc P D White paper (who found no result...
MEA article: "The research team have personal experience of ME/CFS so we understand the energy cost of completing the surveys. Please know that...
Well this was something as an article/advertorial put together focused on trying to PR what has been happening rather, yes it is mostly about...
I hope that the emphasis on physical function being the main measure will be a firm line from the ME Association And , bearing that in mind,...
well that is what they put on it as their suggestion. But of course the only thing the actual research was doing: Trial Report - Exploring the...
In fact on that note that is why I slightly am sympathetic of some of the truly evangelised or saying wrong thing pwme who’ve been thru what is a...
The thing is it isn’t proper psychology. It has been removing the science part that started to try and get in that would have told eg medics how...
Plus of course it isn’t that - there are actual risks and threats. people who don’t shut up have things done to them because‘how dare you’ or...
In a way it’s one of the few where it can be both/isn’t an issue having those two as long as clarified when needed. I see rolling PEM as when you...
I know exactly what you mean. Plus there are a lot of get out of jail free cards someone can tell themselves even if they were to see someone...
It is interesting reading through the MEA news item on this - where it mentions LC potentially, or at least more specifically clinics like the...
I agree - and I think on the basis that there were a few key, and persistent - or one could say pernicious (given how many and such an extended...
Yep. I remember Sarah saying that it/they would be likely to end up being done by someone anyway, and obviously some might be better than others...
Agreed. Probably not for this thread, or not until/if well-formed questions we might want to put up etc?
I agree that this raises significant questions around informed consent on the PROMS research. Those involved know well enough that if not all...
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