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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.

It is interesting reading through the MEA news item on this - where it mentions LC potentially, or at least more specifically clinics like the Isle of Man where it seems they suggest there is a specific LC service or joint one. I don't know much about them but they seem a bit more sensibly...

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 time period) - issues that came up with making research useless as it was such low quality in the assessment of it in that area for the NIce guideline...

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 etc. I think probably it has given me the idea that it might be worth us all having a peek back through the history on what measures these...

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 potential participants would have been wary if this history had been more clear, then those who witnessed it the first time around would have filled them...

:laugh:

Sort of yes. It seems the MEA news article from 2011 shows that at that point things were rather 'on the edge' for GET/CBT with physios having to talk about 'toning it down' and 'the issue being other physios being gung-ho and not gentle enough' (with Bavinton and Gladwell being said physios...

It was/is @Maat it has just taken me this long to get with the programme on that post, by thinking out loud and doing a lot of pasting phrases next to each other from each paper (I'm a bit 'visual' like that :laugh: apologies to those who got it first read for all the posts that might seem...

OK @Maat sorry that I'm basically repeating what you've laid out, but yes it does seem to be quite a clear path. I can see where you have the feeling that White might be involved in the PROMs somewhere behind the scenes too. I may have missed out some of the papers that you have mentioned...