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

Trish said:
The subject of why the MEA is paying for this project has been raised on another thread.

I have been looking at what the MEA said:



These are the relevant bit of the NICE guideline

NICE guideline

https://www.nice.org.uk/guidance/ng...e-diagnosis-and-management-pdf-66143718094021






I think the project does not address either of these recommendations for research.

The first is about outcome measures for treatment trials. We know the problems of subjective outcome measures for unblinded trials, and the importance of using the most clinically relevant and accurate outcome measures even for blinded trials. All our forum discussions have led us, I think, to the conclusion that objective measures are better for ME/CFS. These can include wearable movement sensors worn over weeks or months, cognitive testing and when they become available, blood and other lab tests.
Nowhere in the NICE recommendations does it say outcome measures have to be in the form of PROMS.
The description of this project seems to preclude clinical trial outcome measures in any case, and Sarah Tyson said in forum discussion that was not the intention.

PROMs are not self monitoring tools either. pwME won't be filling in several lengthy questionnaires every day.

So I can't see anywhere in the NICE guideline research recommendations about a need for PROMs for facilitating better clinical care.

I wish the MEA would publish the detailed research proposal that persuaded the MEA to fund this work. I can't see anything in the description the MEA published that justifies PROMs in particular, especially as ME/CFS care is not treatment, so has no symptom or function related outcomes to be measured.
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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?
 
Trish said:
I think the section quoted makes the project sound much broader than it is. What they seem to be aiming for is a set of PROMS, ie questionnaires that can be turned into numbers. And claiming these will provide useful information for helping clinicians assess each patient, and for service evaluation.

In other words, they aim to replace the currently used generic fatigue, physical function, psychological and overall health questionnaires with more specific ones designed with and for ME/CFS.

I think the fundamental problem with this is that they have started from the wrong end. They see the problem that PROMs currently used by ME/CFS clinics and researchers are complained about, eg the Chalder fatigue one and SF-36 PF, so they think what is needed is better PROMs. In order to justify this they make wild and unjustified claims that their version of PROMs are the solution, not only for treatment trials, but for better patient care.

My contention is that PROMs are not useful for ME/CFS because it is a multisymptom fluctuating condition that can't be measured by questionnaires that require pwME to estimate how bad and how disabling their health has been based on recall over a month or more.

Much more useful both for assessing individuals' symptoms and function, would be tracking symptoms and function over weeks or months using wearables and apps.
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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.
 
MrMagoo said:
I don’t know how to move my messages over, apologies. Trish has summarised most of the ideas.
1. Tyson et al approached the MEA asking for funding to do this project, and it doesn’t seem to fit with the MEA’s stated aims for only funding biomedical research. Why are they spending (our) money on this?

2. PROMS are an NHSinitiative and NHS England seems to be the gatekeeper. So whose idea was it to PROMS ME/CFS? Was it NHS England, was it the MEA, was it Tyson et al?

3. My basic googling research shows ther is a guide to making PROMS published by NHS, and we have the NICE guidelines, so why is a whole project needing £90k funding needed. I also now realise Tyson et al are using FUNCAP which already exists….

4 Dr Gladwell and the other DR Mike work for the NHS, couldn’t they be paid an honorarium to do this for their employer?

5. what EXACTLY is the gap MEA speak of identified by NICE? We think it’s the core data set. If we wanted a core data set, we wouldn’t start with NHS specialist clinics as we know they don’t see many of the people with ME who exist, wouldn’t we start with something like an MEA survey?

And we still have the question that certainly started this off for me, driven by anger - why is a lead researcher sponsored by MEA on a forum behaving like Sarah did, exposing prejudicial views about ME patients, and leading such a project?
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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
 
Kitty said:
I've thought about this too, but I wonder if symptoms are part of the difficulty.

What matters to me is what I can do. That's partly governed by how I feel, of course, but also by an assessment of current capacity and the likelihood of unspeakable payback.

I think if I were keeping a record now, I might split it into activity domains instead of symptom groups. Personal care, organising adequate food, running a household, life admin, medical stuff, recreational things at home (possibly split between easy and more challenging), social or recreational things outside the house (ditto), volunteering, ability to spend at least one night away from home, etc.

And how many times a week / month / year I'm currently able to do those things.

It's still subjective, of course, but I wonder if it might give an easier to read picture. A more positive one in some respects, too, which might be helpful with doctors; when I see their poor world-weary faces, I'm reminded how much a symptom list is a record of how bad I feel.

Also, it doesn't represent my life very well. Yes, I'm a wet floorcloth for quite a lot of it, but it doesn't mean I don't enjoy things.
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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 …
 
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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.

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

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A point raised earlier in the thread - would like to know the reasoning on which the MEA judged this project/use of funds.
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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)
 
bobbler said:
Only an app could inform that - because the reason it’s so hard is we are interpreting patterns (have we had more bad days vs threshold/activity challenges, were these days worse than they would have been the month before) it’s often only three months in you can be sure ‘it’s worse’ due to having surety

the other alternative is to have set tasks - which is perfectly possible for them to have used experiments wise too given most will have certain essentials to them in their routine. And a change in how they do it will normally be due to an issue so be a flag in itself.

to have picked the middle ground and potentially be lowest common denominator-ing peoples activities and thresholds (when these are individual to each person which tasks they struggle on and which eg noise or other issues they have as unavoidable and so on) means it isn’t science - but inference (which sadly done get confused and think is science ‘because they did a stat’ and don’t listen to philosophy of science telling them inference isn’t science).

So I’d be interested in the details of how this works that those who’ve been able to fill it in can provide?
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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
 
Trish said:
I had a quick skim through what these were about. Many are paywalled so we can't study them, most are about measuring patients' progress in stroke rehabilitation, clearly not relevant to us since there is no treatment leading to progress, or rehabilitation, in ME/CFS, and anyway the research was mostly about how therapists use the PROMS, not about what patients find useful or not.

PROM stands for Patient reported outcome measures. Clinical care for ME/CFS is not about outcomes of rehab and progress, it's about coping as well as possible. Clinical encounters need to be about diagnosis, treatment of symptoms with medications where possible, pacing education, support and ensuring provision of aids and personal care where necessary. I don't understand where a lengthy questionnaire about PEM fits into that. Personally I'd rather be provided with wearable step and heart rate monitor with advice on how to use it to help prevent PEM, than try to analyse which specific activity might in hindsight have triggered an eplsode of PEM and try to figure out whether to say it's a strenuous activity or not.
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Without actually reading it, providing so many links strikes me as a classic “data dump”.
 
Andy said:
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.
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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
 
sarahtyson said:
If you would like to find out more about how clinical assessment tools can ‘work ‘ in practice, try these.

· https://doi.org/10.1177/026921551456259

· https://doi.org/10.1177/0269215514562590

· https://doi.org/10.3109/09638288.2012.709305

· https://doi.org/10.1016/j.socscimed.2008.03.006

· doi:10.1186/1472-6963-8-217

· https://doi.org/10.1177/0269215509341527

· https://doi.org/10.1080/09593985.2022.2092801

· https://doi.org/10.1186/s41687-018-0061-6

· https://doi.org/10.1136/bmjqs-2013-002524
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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.
 
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Jonathan Edwards said:
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.
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Your student seems to confirm that culture trumps all here?
 
A member has reminded us that Professor Sarah Tyson has co-authored publications on FND.

The vicious cycle of functional neurological disorders: a synthesis of healthcare professionals’ views on working with patients with functional neurological disorder
We have a thread on the first one here. It costs USD65 to access the article for 48 hours.

Sarah Tyson is the senior author on that one, as she is on this one:The management of patients with functional stroke: speech and language therapists’ views and experiences
That means that she is mentoring a new generation of people in FND approaches.

Both studies were funded by the NIHR.

It is very difficult to understand what the MEA was thinking in using precious donated funds to support an FND researcher to produce an ME/CFS clinical toolkit for NHS clinics, not least when the researcher clearly has access to NIHR funding.

This post has been copied and the following discussion of FND has been moved to:
Functional Neurological Disorder (FND) - articles, social media and discussion
 
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Hutan said:
We have a thread on the first one
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I have just looked up this thread, and am physically shaking with anger at this whole FND approach.

Hutan said:
t is very difficult to understand what the MEA was thinking in using precious donated funds to support an FND researcher to produce an ME/CFS clinical toolkit for NHS clinics, not least when the researcher clearly has access to NIHR funding.
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This. Questions need asking, very firmly.

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

Hutan said:
That means that she is mentoring a new generation of people in FND approaches.
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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
 
Hutan said:
Sarah Tyson is the senior author on that one, as she is on this one:The management of patients with functional stroke: speech and language therapists’ views and experiences
That means that she is mentoring a new generation of people in FND approaches.
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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
 
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Science For ME said:
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.
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Thank you to the Committee for putting hard work into these letters that I feel express our concerns very clearly.
 
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