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

Bolding mine

What transpired seems to be the opposite. My reading of this that it was to be a co production, foregrounding the patient experience, identifying gaps in provision and bridging the gap between clinicians and patients to identify how to resolve these gaps and meet unmet needs. (To me, the most glaring of which is severe patients being discharged as too complex to treat as they are unable to attend clinics / two hour rehab course)

"The main outcome from this research will be a clinical toolkit and a greater understanding of patient difficulties, their needs, and satisfaction with service provision,"

How is a questionnaire "a clinical toolkit"? What are the options it offers for treatment? Does it contain clinical pathways? eg if HR changes refer for PoTs review, if MH score reduced refer to psychologist for support, if struggling with benefits, refer to advisors, if overall symptoms worse, speak to pacing expert, if struggling at home, contact OT or Adult Social Care etc)
How is asking about symptoms from one questionnaire to another, with no quantifiable measures (has step count increased? has Visible score changed? review range of symptoms experienced on the visible app nightly check in?) leading to "greater understanding of patient difficulties, their needs, and satisfaction with service provision"

"understanding of patient difficulties, their needs, and satisfaction with service provision"

Seem to be conflating two questions?

I would have thought that this needs to start further upstream by:

1. identifying all those with ME [via GPs] - which means coding them properly (define the extent of the problem)
2. surveying the patients to find out what their needs are (define the problem to be solved by asking the users)
3. producing a range of services to meet the identified need (produce suitable solution options)
4. review how identified solutions and existing options meet needs based on 1&2 - plan how any gaps are to be filled
5. review how solutions are meeting needs against measures defined in 1&2
6. adjust accordingly

I may be wrong, as I am former buyer and used to write tenders for clients using specifications based on their defined requirements, so might be a case of "I have a hammer, everything is a nail" but it seem seems that the first two paragraphs of the quote are saying we going to do 1 - 5 but what is being suggested is "monitor progress and outcomes through NHS ME/CFS specialist services.” which is half of 5 without 1-4 or 6.

I am also a psychology graduate and have had ME for 17 years and Long Covid for over two and have quite a lot of ideas as to how the project (as I have defined it, according to their description) could be run. Especially having had experience of both of the ME and LC clinics.

The LC clinic seems to be further along with this "toolkit" idea, with signposting to the HOPE course (which covers much the same themes as ME clinic course, but via a self study app) a rehab course (which includes cognitive pacing) and pacing appointments and psychologist appointments to learn how to to accept the unacceptable and these are adapted by patient need and are all virtual.

I feel like there was a good idea here but there was also a pre defined outcome. Did I misunderstand?

And, to repeat other's questions, why were MEA funding this? This seems like something the ME services should have been doing themselves in light of the NICE Guidelines.

Was the MEA tasked with the project as a "neutral 3rd party" to act as buffer between clinics and patients?

Sorry, it is very early and I have just read that again, their aim is:

"helping people with the condition and healthcare professionals identify needs and concerns, plan support together, monitor progress and outcomes through NHS ME/CFS specialist services.”

The aim is to assess patients and decide what they need from existing ME/CFS specialist services and then assess how well that need was met, out of the existing limited range of services provided by the existing services based on what they currently offer.

Oh.


Edit to add: Mods this might need to go in the emotional support thread and not here?

 

Perhaps a tangent, but I have intended for several years to produce a symptom record list that would enable individuals to record their symptoms on an ongoing basis indicating their onset, variation and severity for use in discussion with doctors to inform decisions about how frequently medical review is required and if further medical investigations of new or worsening symptoms is appropriate.

I always get tangled up in how to organise any symptom list without making unwarranted assumptions about what ME is, or how detailed to go subdividing symptom categories, for example do you record cognitive issues under that broad heading or subdivide it into memory, reading, reasoning, etc. But also I struggle getting my head around how to tabulate any scoring to meaningfully indicate variation over time.

My reasoning for this would be, as said, to inform interaction with medical services. Also I wonder if this could contribute to a better description of what ME involves, a natural history of ME as it were, and potentially offer clues to any sub groupings within ME.

This differs from PROMS in that it would not directly indicate how functionality is effected nor necessarily indicate any impact from intervention, however it would have the advantage of getting away from psychologically focused questionnaires.

 

this is a really good idea

It would also act as way of comparing ME subtypes and demonstrate fluctuations over time / life times between patients.

Yes. this would be really helpful as I can speak quite fluently, but am quite forgetful now, whereas two friends have a lot of word finding issues and need time to think & formulate responses.

If i remember correctly Jaime Seltzer was working on a symptom list measurement tool?

There needs to be some way to combine this with the DecodeME questionnaires and the Visible app scoring system?

I see this working like the pain scale, which is subjective to the individual, but i have heard suggestions that 8/10 correlates with childbirth. As someone who has never been though that, it wasn't terribly helpful, but I do know what "in too much pain to be able to think" feels like, especially post operatively, so we could figure something out?

I would offer to help, but have been told very firmly that I very much need to stop volunteering myself as my expectations far exceed my capacity!!!

 

Thanks for the clarification @Trish that is helpful and somewhat frustrating

Quite.

This seems to be a common problem. The DWP 's Back to Work plan is making the same mistake.

 

Thanks @Hutan again, clarification appreciated. I am never quite sure how I come across so wasn't sure if this was helpful or a bit ranty!

 

Found this* by searching online [ME/CFS + NICE + core outcomes database]. On the face of it the body providing the funding to NHS England [Department of Health and Social Care - DHSC] should include assessment i.e. here's the money --- you need to measure x, y -- and report the results to DHSC.
Note Jonathan's comments that potentially DHSC was unlikely to develop monitoring tools; therefore, ME Association decided to step in and do it.
All very well but presumably MEA was aware of the challenges - starting with those highlighted by NICE (which they were attempting to address)!


*
Individual research recommendation details

Recommendation ID
NG206/02
Question

A core outcome set: What core set of relevant health outcome measures should be used for trials of treatments for ME/CFS and managing symptoms of ME/CFS?

Any explanatory notes
(if applicable)
For a short explanation of why the committee made this recommendation, see the rationale section on managing ME/CFS. Full details of the evidence and the committee's discussion are in evidence review G: nonpharmacological management of ME/CFS.


https://www.nice.org.uk/researchrec...ts-for-me-cfs-and-managing-symptoms-of-me-cfs

 

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?

 

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.

 

And this is the issue - PROMS is going to measure people who attend an NHS specialist clinic.
We know many people are doing their own monitoring (yes, using different technologies, or none) so there’s actually a really good, big patient group who could supply a good data set, if that was truly what the MEA wanted.

 

I love your descriptions @Kitty

I am stealing this; as it sounds like something a Victorian gentleman would say before slapping someone with a glove and challenging them to a duel

"Damn you unplanned visitor, for you have caused me unspeakable payback - you shall answer for this!"

Guess who urgently needs to get some sleep?

 

Does anyone really measure how they’ve been in “a month” I can do days, maybe weeks as a summary of great/good/bad/awful or whatever scale, but a month contains at least two extremes for me.

And measuring what I can’t do is useful too. The PIP process taught me that.

 

Yes it was deliberately disingenously worded, classic straw-man. Although filling out questionnaires can also harm people too. It is for her to prove that has not been the case when it is raised as an ongoing concern regarding safety, not the other way around, much as she might 'switch hats'

Either way, she isn't doing an experiment on 'whether people can fill out any old questionnaire'

She is asking for questionnaires to be filled out in order to use that information, and is being sophist suggesting anything else. WHich again makes someone sound unsuitable for research. It could be a focus group or something else that she was using.

And people who create these are expected to answer for what they will be using such information for.

I'm sorry but her response seems to be a proxy for 'I reject the premise of the question about whether I'm conscious of not harming participants'. Or 'faux offence'.

There isn't a questionnaire in the world where someone wouldn't expect someone will ask 'what will these answers be used for' or 'how will this be used' or 'who will see/analyse this'.

So how rude. And insinuating that the same basic respect and human rights are due to those being claimed to be 'represented by this project'.

Next time she is on an aeroplane and is asked to fill in that long survey from the airline that suddenly lurches into what TV brand they prefer or filling out a form for a service she needs to pay for and choosing not to tick the box regarding her data be passed on 'to third parties' she might want to think about what she has said to others.

And all the more ridiculous given the area is strewn with actual evidence of fraud and inadvertent incompetence being used to create and prop up what have been the most harmful of treatments and hostile environments for the very people she is saying 'trust me' to.

I'm sure she has watched the Parliamentary debates otherwise I don't think she should have been allowed near the project. Any right-minded person who claims to work in anything with good intentions in the area of health therefore should be asking for proof something 'won't harm' not the nonsense phrase that she used which is sophism.

Could you imagine someone planning to research cancer drugs or treatment asking people with cancer to 'provide evidence to prove that a treatment will cause them harm' instead of being interested in their concerns or feedback?

and monitoring would perhaps work from individuals list of symptoms like a list of old ones asked where they are and if anything new has developed

I am conscious of how draining questionnaires that are making you think about these things actually are

someone is exhausted and more than likely over-capacity to threshold whatever severity they are much of the time so one foot in front of the other is the focus over the much-misinterpreted but assumed idea ‘we think about symptoms’ we both don’t and because no one is interested or beliefs and we haven’t been given good words to articulate them … well it’s pretty impossible doing all that analysis in that space if time in a questionnaire no matter what the setter might think

I’m not sure yet snd need to think on what makes it easier or harder whether it is individual things or holistic shires but I suspect it is a holistic score + reporting specific and personal iOS, downs and primary issues

we need for anything of this type to be useful to be done between appointments so they can actually pick up ‘moments of truth’ when changes to a care plan could head off something becoming permanently worse simply by too much time being taken to put adjustments into place etc.

This of course

I think the dilemma is that there is a push eg with LC to ignore PEM just as I assumed they’d want to ignore PEM and rewrite it after the guideline - because it’s annoying bs the idea of fatigue and pretending you’ve change whilst still delivering stuff based on a fatigue ideology in these old school clinics. Which all believes how you think somehow mediates the reaction of an action on your body. Which is delusion. But a nice job telling people what to do.

so MEA were right to require PEM was included and front and centre on measures if there are any. And that needs to be gif right.

I just wonder with the psychometric how much has been about getting peoples data/responses to run thru a psychometric model and prop up claims of internal consistency in place of external validity ie does it even measure what it claims is being given short shrift with few checks those identified with high/low scores are being cross-compared against them assessing sane people with top biomedical consultant’s assessments

so what are they measuring for a start?

 

Which is weird because they are focusing more on that - which is relevant for an app which is useful individually because it tells you when things have changed more forensically- but this is instead using using clues to help people avoid PEMseeks to be computing overall scores in a condition that fluctuates


Is the detail of the reason for the two week retest and methodological steps (and why) on ‘validation’ proviruses by these guys do we can see what is and isn’t there on this lists of processes?

 

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 me, showering would be a great example for a lot of people because if you have to change what you do there it’s pretty much at the top of the hierarchy on priority so you’ve ’got a red flag’ and the detail of what has changed is insightful to what’s going on underneath (is it exhaustion, orthostatic and so on)

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?

 

It’s a very badly worded question. Basic market research how to word a questionnaire says you shouldn’t have multiple loading of questions into each other and you need to make clearer what is being asked.

my gut when I was thinking how you’d make these assessments better was to ask people for specific direct overall numbers however you would provide specific tasks and tests (relevant to their severity) that help them to do this (ones they do at home and could also like jonathon suggested be based on ‘meaningful to them’ activities eg showering) are they aware of the size of task they thrown in there

and are they using it to check internal consistency of their own calculated score with peoples estimated of their overall? Or using this raw as it should where ‘I’ve generally felt the same but eg my hands and orthostatic have been more problematic than normal’ being useful for moments of truth and learning for good professionals.

which is again why there is an issue of without looking at the staff themselves and their ability to use this without agenda also needs to be part if the sign off etc

particularly when this strikes me as something ingouencable due to its ambiguity and cherry-pickable all over the place leading to people doing what they want particularly when the don’t know how to use it and don’t have services changed with it - but we’ve a tail-wags-dog historical issue where people HAVE diagnosed people based on WHAT they want to offer them and not the other way around ie not medicine or therapy

Chalder is the classic in de professionalising all of these subjects by creating ‘transdiagnostic’ a laughable term saying ‘diagnosis doesn’t matter we’ll force feed what we want anyway’ and pretending they are still in medicine - they aren’t and should be refunded, rebadged and de-powered as such if that’s how/what they want to do/be because you can’t have those reasons for being and safeguards removed and still want the loot and ownership of people without justification

just because this ‘seems a precedent’ doesn’t mean it is correct

 

Yes there are lots of papers re:whether it is more accurate to ‘measure the gap directly’ bs calculate the gap by measuring two different time points across lots of literatures particularly service management for example.

and of course it sounds like medicine would agree from a method point of view.

so even whilst still it seeming muddled why they are doing this either way I’m struggling to see the random context where this method approach is justified as best way?

 

I agree with all of this.