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

Indeed that information is pertinent because whether it was justified to pay for it seems in my mind to rely on the ‘control gates’ they have to insist of changes in methodology and oversee stakeholder input being heard properly (not just preferred voices and a nod to consultation whilst doing the same old psychometric scale done for LC when that one was just one tweaked off the shelf without this process too)

I don’t think, hopefully as owner of this meaning they can choose what is or isn’t done with it, they should be afraid to control its usage and bin what doesn’t work keeping it merely as an example of lessons-learned/we gave good faith if necessary

but what is the situation re ownership vs funding?

 

I’m also concerned that despite asking questions this detail wasn’t sufficiently explained so input could be focused appropriately vs what they planned to do being a ‘best fit’ even within that remit.

which is why I’ve been confused and asked elsewhere whether there is some standard protocol for how these are produced that we are missing - and looking at other PROMS vs their caveated context-bound usage/purpose might be useful in working out any limitations due to orthodoxy or regs or if it is just ‘norms’ fir other reasons.

 

This

well summarised

there is an important question to be raised with the MEA here and these questions/the answers to them are useful in knowing what is really going on and who has been driving this vs who does have any power to change this if the brief suggested anything different re promises

 

I would underline ‘do without payback’ and ‘deterioration’ and the thing is that currently we are still in a battle with behaviourist that really only we can tell them what that is whereas underneath they STILL i think have beliefs , flase ones which the Nice guideline was clear was the nub of its direction for ALL treatment that these HCPs needed to deprogrammed themselves of. But I suspect those false beliefs and treating us as if WE have them is still at the heart of what they want to do as a job.

making their measures both impenetrable and directly influenceable by lots of inputs all of which could be nudged on ‘at the time’ and none of which are calibrated with actual medical assessments is a massive issue in this contexts eg still embedding, without consent from anyone the ‘CBT-ing language’ to get people to nudge up their answer La to be ‘more positive’ aka ‘Gizza another point on the scale’ manipulatively disguised even to themselves with a nice ‘Pat on the head’ and ‘see you feel better now’ [that I’ve suggested maybe you just overdid it this week or ‘it’s been a big journey’]


Either this should be focusing on tools and tests individuals do at home to provide one overall score the clinic doesn’t influence and any ‘I want to highlight an increased symptom in x’ in order that can be given a pathway snd suppport ie a very short actual questionnaire but very helpful instructions to make what people understand they are measuring in those scores is absolutely accurate and valid

or

we wait

and it needs different staff who can make medical assessments

but the score given to services always needed primarily to be something administered independently ie by forward ME and not marking own homework.

a service isn’t good based on the health of those attending it and I’m very concerned about that same dodgy proxy happening again meaning patients ‘doing more’ becomes seen short-term as the way to a good score …

 

Some PROMS info from NHS data
https://digital.nhs.uk/data-and-inf...-measures-proms#finalised-proms-data-releases
They seem mainly to have been used for surgical procedures like hip replacement

 

And a discussion from the other thread - how does funding PROMS fit the MeA’s criteria.
Some suggestions were made of how they might argue it fits, I for one am unhappy that my donations are being spent on this sort of “research” (and this researcher!) I’d expect the NHS make PROMS if they want them.




A point raised earlier in the thread - would like to know the reasoning on which the MEA judged this project/use of funds.

 

If the researcher turns out to not be doing anything special method wise (really bad if these were all used fir different contexts and aren’t even being checked if it transfers) or more appropriate to the pwme than the nhs would for these and indeed might be getting less oversight (surely the nhs even would not stand for the outburst)

 

To be clear what I mean by this is that this / these types of questions breach basic guidelines of any research (whether you are market research regulated or any other subject) of making sure that any question you ask must be one that the respondents will be able to /qualified to answer

the question is the issue here and it’s a lazy approach tgat they have decided to pretend they can’t see this issue instead of tackling what ‘frames of reference’ and home simple tests they could use to allow all people to be interpreting the question the same way and able / helped to answer it

 

Has there been any feedback from MEA
@Andy
@Trish

 

I haven't heard from the MEA for 30 days now. They would seem to be happy for people that they fund to be abusive towards members of the patient community that they claim to represent.

 

Without actually reading it, providing so many links strikes me as a classic “data dump”.

 

I’m not happy to fund it. I assume they’ll be pleased to refund my money on account of insult offered to my friends on my coin? No, i imagine not

 

I had not bothered to look at these. This is not even usable data. It is a series of 'qualitative' studies that tell us nothing more than, to quote one ' Staff were generally positive about the toolkit'

If this is what is aimed at there is no justification for funding it.
I am afraid it is more a question of 'If you would like to find out more about how rehabilitationists try to convince themselves that clinical assessment tools can ‘work ‘ in practice, try these.'

Why oh why does research for ME have to be allowed to based on such poor quality methods?
There is something strange about the psychology of this. One of my most intelligent and capable trainees spent ten years learning about evidence quality in research and was capable of taking apart anything substandard as a registrar and yet became an eminent rehabilitationist happy to go along with this sort of qualitative stuff and to claim that we know what works.

 

Your student seems to confirm that culture trumps all here?

 

I have just looked up this thread, and am physically shaking with anger at this whole FND approach.

This. Questions need asking, very firmly.

How did MEA decide that an FND researcher would be the best fit for this work?

How is this allowed to continue?

I have just seen this letter linked on the above thread, co authored with Dave Tuller and am now very confused indeed

 

I don' think that we should be judging people by what they study, though, @Hutan.
Sarah worked in rehabilitation and would have come across patients with the diagnosis of functional stroke - as the paper says.

I have only looked at the abstract but it looks pretty good. This is a situation where qualitative research is appropriate - in assessing the scope of a practical clinical challenge.

The gist of the paper is ' we all see these patients, the situation is terrible because of stigma and because we have no idea what we are doing because we had no relevant training and nobody seems to know enough to provide any guidance. '

Honest and to the point.

This post has been copied and the following discussion of FND has been moved to:
Functional Neurological Disorder (FND) - articles, social media and discussion

 

The forum committee have sent two letters to the trustees of the MEA about this project. They are posted here:
Open letters to the UK ME Association trustees about a research project developing PROMs, led by Sarah Tyson
In order not to split discussion over too many threads, that thread has been locked, and will be used to post any replies we receive from the MEA.

You can discuss the letters on this thread.

 

Thank you to the Committee for putting hard work into these letters that I feel express our concerns very clearly.