UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

[Trish]

So would I be right to summarise as the problem being Tyson et al?

Yes, if you include in 'et al' all of BACME and their continuing dominance in ME/CFS provision. If FUNCAP were adopted instead of the Tyson PROMs it could still be a problem if it's used to justify ongoing rehab style clinics, though it might be harder to misuse it to pretend the clinics are showing patients' health improving.

 

[Kitty]

1. This iteration of a PROM for pwME
Or
2. Any PROM for pwME
3.would it be possible to write a PROM for ME/CFS without it being harmful?
4. Would it be possible to write a PROM for ME/CFS that is useful to pwME?

I'm objecting to pretending to measure outcomes when they are not offering treatment. There is nothing to measure.

When we have a promising candidate we can start designing measures to show whether it works as expected.

Currently we do not.

 

[MrMagoo]

I'm objecting to pretending to measure outcomes when they are not offering treatment. There is nothing to measure.

When we have a promising candidate we can start designing measures to show whether it works as expected.

Currently we do not.

So you are objecting to PROMs?

 

[Kitty]

So you are objecting to PROMs?

More to the inappropriate use of them.

If a thing claims to be a measure, it must be clear what it's measuring and that it is in fact measurable.

The clinics do not offer treatment for ME/CFS, so what are they measuring?

The effect of advice and information, for instance, could only be measured if there was a mechanism to establish what people already knew and understood before they went. We have yet to see that questionnaire.


[Edited to add the word "questionnaire", which I thought I'd typed!]