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I think Catherine tates grandma character could do a powerful one along these lines if she pitched it right that one could actually make a difference in holding up a mirror to a few people about how it sounds like (and is) bigotry (and isn’t science they think they know when they say ‘just go...

I think the papers that I’ve been mentioning recently show that the comment about it not being used in research are a bit disingenuous and a flase separation given the conclusion of Crawley eg al (2013)

PLease move if in wrong place I just found the following pages on 'best interests' - I'm sure people have read these sorts of things in many different places but found this one interesting as it is necessarily a different angle as it covers those with learning difficulties, but I wonder whether...

I think it is definitely worth us switching to that thread and looking through his criticisms in detail I'm minded they went into that knowing perhaps they wanted to get rid of the 'physical function' measure years ago SO I don't know whether this was a tick-box exercise of 'any old excuse'...

I don't argue with that - but I thought when this project was first advertised that they made it sound like the reason for it and purpose of the measure was what they are now calling 'PREM' And on that basis the entire 'PROM' should pretty much only be the 'PREM' if it is about assessing the...

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 or undiagnosed Parkinson's, MS or something) so still have vertigo' but without the bit where they acknowledge you can't treat all vertigo with...

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 best practice in other sectors and scenarios Often these things begin with someone standing up doing a case study about how they built a service...

From MEA press release (my bolding): "Well-developed assessment tools that represent people’s experience and produce robust, good quality information/data have several benefits for both people with ME/CFS and NHS specialist services. First, and most importantly, they are a way for people to...

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 suspicion is based on a faint memory that with waves then a 'faster' wave moves through and collects other waves and gets bigger/faster and so on - so...

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 the tin vs the 'new/accurate' understanding of ME/CFS , EDIT to add: actually a 'terminology framework' so it almost pre-defines the next one to add...

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 for physical function) is how 'rolled in together' these PROMS are aiming to be regarding the end score or profile or whatever the output is. If...

MEA article: "The research team have personal experience of ME/CFS so we understand the energy cost of completing the surveys. Please know that your efforts are greatly appreciated and your feedback is being put to good use. Thank you so much!" "We have been overwhelmed and humbled by the...

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 selling the PROMS project (trojan-horsing the paper which was about the CFQ and didn't test PROMS at all as a 'reason for press release' but then quickly...

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, there is some standing-back and thinking how that needs to be appropriately measured without constraining it to having to be within 'constraints' pitched...

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 content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population, 2024, Gladwell | Science for ME (s4me.info) is...

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 process of foot on neck to point of destruction and knowing that will just be increased as you get more ill, to then have some slimy person who says...

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 to set things up not to harm normal people - simple stuff like spend the money speeding up test results instead of accepting it then providing...

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 ‘you can’t say that’ or then actually believing you are mad (because one of you has to be given the differences in what you think) in revenge, to hurt...

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 basically never get out of PEM and so rolling means you are having to push through and thereby probably exacerbating and exacerbating things. Maybe...

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 clearly more ill if they are really hooked into certain mindsets.