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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...

Oh yes and (sorry brain is picking up on things then train of thought spots another to summarise).. to draw attention back up to near the top of this, with the paper that included CRawley and White (2013) explicitly saying 'physical function' in the abstract conclusion: "Patients who attend NHS...

Oh yes and (sorry brain is picking up on things then train of thought spots another to summarise).. to draw attention back up to near the top of this, with the paper that included CRawley and White (2013) explicitly saying 'physical function' in the abstract conclusion: "Patients who attend NHS...

Not even read the paper yet. But even this line is just much needed, along with a half-decent term that I like because it puts the action and issue on the subject and not the object it is being done to

IN relation to the conclusion on the paper with Crawley and White (2013) , "Although NHS services are moderately effective in improving fatigue in patients with chronic fatigue syndrome, they are much less effective in improving physical function than similar treatments delivered in the PACE...

Adding up these dates. I'm starting to wonder whether instead of 'repeating' it is more 'a continuation' ie those who thought they were on the 'more balanced' side (not necessarily outside their bubble is that confirmed) were planning these PROMS because they 'thought GET needed tweaking' from...

Copied from: UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023 This is an aside and isn't to do with any of the PROMS authors here, however I just needed to get it out because I couldn't quite believe it (certainly given what we...

This is an aside and isn't to do with any of the PROMS authors here, however I just needed to get it out because I couldn't quite believe it (certainly given what we know/is acknowledged now). From the Crawley and White (2013) paper: Treatment outcome in adults with chronic fatigue syndrome: a...

OK I'm chipping away at reading through this in more detail. I can see exactly what you mean about patterns emerging. And it is interesting to note that whilst PACE trial was going on there was also a concurrent trial from Crawley and White which they (I assume chose to delay) didn't publish...

And they've claimed the same thing in this paper that they claimed in the one on the other thread (2024): "Participants were a cohort of patients attending their first appointment at a specialist ME/CFS service in an NHS Trust. This service provides assessment by a specialist clinician to...

OK @Maat I have just found the thread for the one released in 2023 that was on PROMs and included Gladwell. Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with ME/CFS, 2023, Jones, Gladwell | Science for ME (s4me.info) The...

Hmm, I've found this from GLadwell and others on Full article: Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with myalgic encephalomyelitis/chronic fatigue syndrome (tandfonline.com) It says it was submitted Oct 2022. I'm...