This is an important question. And I seem to remember some important points about frames of reference that were prompted by another paper in the last year (might have been just before that reply by Sarah Tsyon on another thread) that I think
@Hutan is also mentioning in her comment.
I'm just dropping by at this point because I'm reading David Tuller's piece on the physios4FMD research:
Trial By Error: Null Results in Physiotherapy Trial for Functional Motor Disorder | Virology Blog
And it made me think of one important thing. Which is that for these people I can well imagine the next step is that if you don't get your results you want then change the measures (like we saw explicitly suggested in the Crawley et al, 2013 paper - another arm of PACE but done 'in clinic'
but it didn't get any results for physical function so suggested it needed PROMS developing to 'change what was being measured', and of course we have seen this enacted slowly through the literature over the years since that by that same group).
And of course we know about ceiling and floor effects in the Chalder fatigue questionnaire
There is something rather important about us being able to remind everyone else not just about the coercion that is present in research done to people with things deemed as 'functional' and looked into by certain individuals who might also have powers over their being assessed as 'non-compliant' affecting all sorts etc. who are trapped in a rather more powerless situation than would be acceptable for any other condition
But also about whether any claimed, fished around for supposed 'change' is
meaningful. And by that it means meaningful in the sense of whether other people would find it acceptable that people who don't want to hear about or acknowledge the harms or how much had to be sacrificed for that person to apparently improve how many times they could wave their hand on a test on that given day, actually doing so not because their health improved but because they felt coerced or misled to give up other more important activities like reducing shopping, reading, showering in order to perform on something useless day-to-day.
And in the search for people from certain sectors where there seems to be some norm or pressure to find silver lining claims, and in the context of what we are currently seeing with attitude to disabilities happenning with the government changes to disability benefits, it really is pretty key that we have something that 'frame of references' the sheer debilitation of the illness vs other very different situations or injuries or conditions it now seems. We can't assume anything as common sense or understood.
So I agree on the FUNCAP but I also am starting to think we need
both measures in order to triangulate sheer level of disabiltiy into that [vs other conditions people do understand the debility-level for - there is something quite important about a SF-36 42 score vs 58 for 'something they can visualise'].
There is something important about an existing OK'd thing being used over leaving it to the whims of people with other concerns and foci.
I think triangulation / pinning the ME-specific scale vs one that is disability in general is the sort of term I'm meaning here. Given minimisation has been such a problem for our illness(es).
And also to point out that anyone who claims a tiny % increase, even if it wasn't cajoled or based on false hope or people-pleasing or having been fed a coffee that day after having perfected the journey being low exertion compared to the first time of assessment, realises that even if it wasn't at the sacrifice of even bigger downsides then it really isn't meaningful to the extent anyone should be using the term or allowed to use the term 'trying to help'
I'm conscious for example of how important it was as context when looking at the NIH Walitt study to be able to get a sense too of who was post hoc in which groups, and then understand the conditions of and under which the eg effort preference task was being done.