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

I'm not feeling well enough to reply in detail right now.

But I think that we need to remember that this is for clinics, and people who cannot think beyond the behavioural. And sadly very similar information can be converted into that 'ethos' as would be for whatever this is for.

I agree that we should be having medical assessments. I agree that using tech to allow people to inform their 'overall' answers, but I do not think writing down all the details for someone who doesn't 'get it' to analyse out of context is where we are at yet.

The reason is:

- it can't capture everything, and when you are more severe then what is 'done to' and isn't registered on a pedometer is what is hurting you. Whether you are vertical or your feet up is as relevant as anything else. Someone shouting at you, noise, light, trying to sort out things for which you have no help, not enough money and logistically a broken body expected to do the impossible with to receive it is a daily thing. None of this is captured. And yet a list like this would be deceptive to those who capture it. Any time you choose to measure something you have to be sure that what you are measuring is what you mean to - and not just a combo of what 'you can get hold of'. I know this from other contexts, where the latter is easily fallen into as the stats available to be used rather than gaps that are more relevant identified

- you can be really unwell but having a week of unavoidable 'activity' if something diahoreaas on you and your home but you are very very unwell then you scrape your way to sort that over eating or brushing your teeth. The 'aftermath' is when? That is the bit we haven't yet managed to research properly - and I don't think these proms come with a list of how these need to be analysed as a pattern.

- the real harm hits 6 months in (and then time to acknowledge to yourself it is real and not a 'bad week'). The times my health has worsened have been the ones where I have been forced to operate 'above threshold' in the way we all constantly learn to breach our bodies limits to 'perform'. In fact that is what the delusion of GET and CBT was about. 'if done right' that would have someone smiling feeling clever that they are operating 10% above what they should whilst having no life but just about managing with their job, then at 6-12 months experience a slow decline to a new level of disability from which they never ever recover. I've done it many times. Until people realise they need to be turning on its head what they read 'at the time', I'm sorry but we will have people who jump the gun embarrass themselves by thinking they've 'cured' or 'had really good effects' for someone and then when the humiliating (and it is, as a patient you get to lose your independence whilst feeling like a fool) actual result hits they will not want to see it and probably won't - because those people will either be too ill or feel embarrassed or scared to admit how they've ended up more ill.

EDIT to add: the patient at that point will also be feeling very fragile and vulnerable (due to now being in a situation eg at work that makes them so) and much more suggestible to 'get out of jail free' clauses like 'must have been a virus you didn't notice' or 'maybe it is short term'. And eventually that attitude; whilst they will seem to be happy with it 'in-appointment' and play along; will have psychological effects once home that are harmful and lead to them stopping going along to appointments because they never say what they mean to say and if they do it gets 'encouraged to be changed to something more positive' (whatever the 'positive intention' of that it is violating in a worse way than when you pay for and say you love a terrible hairdo - imagine if you were forced to go back to same hairdresser and keep repeating that peer pressure telling them they are great whilst you walk round with horrible hair)

We all know this. I agree there are some better things that are more objective than a fatigue scale. But we need to know what we are measuring and when is relevant.

This would just be potentially awful. And I am not putting my no energy into doing an intricate diary instead of brushing my teeth - something which would make me excruciatingly vulnerable to someone and I'd have to guess whether if made to do it whether I have to lie to keep myself safe to survive yet another few months, which has been my entire life of just survive the next few months because things are that dangerous unless you have a lucky situation. Putting all that down can be parsed by any bad person or someone 'having a bad day' because they 'feel their life is hard' and are allowed to have no perspective on ours.

The fatigue scale is awful because we aren't 'fatigued'. We have a condition where cumulative - over many months, as well as 'at the time' (then needing to rest off PEM fully, and getting permanent ongoing effects if not allowed the full recovery which we rarely are) - over-threshold has consequences. Consequences that lead to us being ill and having reduced function. Such reduced function it is everything and we have to prioritise what is left-over after others have taken from it, which might be nothing (eg if noise or shouting or other selfishness). I can see exactly how all of this information is used by people who cart before horse or want to pretend those who are harmed by being shouted at and having what they need removed from them are just 'being sensitive'.

 

I hate that having to just top-level describe the exact, objective, truth and reality which is extremely toned-down will be laughed at by people like the author of this. And mean that because I experienced abuse downsides and harms caused by the old 'regime' and noone steps in and noone will come to look and see the consequences of what they did and if they did would just call me pathetic rather being shocked at what they did apparently makes my input 'illegitimate'.

If I ever ran a focus group where I name-called and shouted down those who weren't saying what I wanted to hear I would I hope have eventually been sacked. It is worse than fraud. That research would certainly have to be binned. Heck disrespecting or not making people feel appropriately safe to be able to note everything that needed to be noted would be the height of unprofessionalism. That would also make such research garbage and tainted by being exclusionary to those it needed to most capture input from.

It might be accidental due to temperament or other things 'going on', but the chilling effect is the same whether deliberate or not. And I've seen no attempt to apologise and remedy it by making sure that those who need most access to input finally into these things aren't left this way feeling their truth will be laughed at and belittled. When they were only saying it, because their professional expertise and experience tells them she needed to know, because it will impact what she needs to incorporate into design and management.

I now feel thoroughly violated by the woman's outburst and the fact she would dare utter such untruths intended to undermine. ANd it is clear that me expressing what she has done and the consequences of it, with my disability and the lack of her understanding requiring lots of words means I'm merely providing another opportunity for her to slander me by it 'being long'. That when we are at the point where we need the truth of those who have experience to claim 'something works' to be elicited and she has made that unsafe instead of doing all she can to make it safe I find outrageous. From a professionality point of view.

But I also feel violated that this continues without being addressed or explained or changed. This has provided permission to this same, old, tired, tactic to be used to impact the sample claimed to 'represent'.

And that those running it haven't expected a remedying of all this but again brushed such under the carpet meaning the same 'shouting works' happens again. And so someone who is exclusionary to those who have had the worst experiences and won't lie or dumb down their knowledge to sign-off something that has problems happens again.

I feel a huge conversation was brought up by that behaviour and has been ducked and that ducking says it all.

 

Until there is wholesale education of medical staff in primary care and clinics the value of toolkits etc is limited .
It's the wrong way around

 

Thank you for sharing these comments @bobbler they really resonated with me. I have found myself thinking about this all morning, as they have provoked some very strong feelings, but am not sure that this is the most appropriate place to share them.

Perhaps we should have a members only thread to continue the discussion? Mods?

I feel quite strongly about this, so please tag me in or whatever is needed for me to help. Thanks @Trish

 

I've experienced something similar, I'm in far less pain now that I'm very severe compared to 15 years ago when I was mild. Why? Because back then I kept ignoring my limitations, putting my self in PERI - Post Exertional Rheumatic Injury. If somebody were to use standard measures upon me such as the VAS (Visual Analogue Pain Scale) then I would be counted as a success story even though I'm now completely bed bound.

 

And when I mention 'professional/basic professionalism' in this here is the code of conduct page for the Market Research Society: Code of Conduct | Market Research Society (mrs.org.uk)

Whether someone is a member or not it provides basic standards for a reason, from which other research isn't actually exempt to be good research.

And I note this page notes that additions include increased emphasis on things like 'participant wellbeing' and 'representative samples'

just in case I have received any 'snortles' about 'catastrophisation' someone imagines conveniently something they don't [want to] agree with to be.

 

This is the most frustrating part about the comment. Completing a questionnaire generates data, in research or service - this is where it can become harmful. "What gets measured gets managed" - so if what is measured is not relevant or inaccurate due to response biases then this will directly affect outcomes for patients.

If this was not the case, then there would be no need to develop accurate PROMs in the first place.

 

Particularly @Hutan but also any others who might be able to help here as I've had a hectic time of it recently but need to get back up to speed on this?

OK so early in this thread I noted the work that had been done on Covid and the Yorkshire rehab scale etc and that one of those involved in this project had also worked on that. WHich is fine. It made sense that I flagged this and asked the question about how that experience was being brought to this project etc.

And sort of got some answers - I believe suggesting that yes he had been involved but that this was different so... I guess we could take the 'expertise' from that as interesting but not the 'approach' because the expertise was in Rasch analysis.

I'm now trying to catch up in seeing what has actually 'happened' and been produced and what that turned out to be based on, as well as what it wasn't based on (even if it was collected)

Can someone bring me up to date or help me work out now, not actually that many months down the line for ME-input from those who are really sick, what those responses were and whether what was then produced was different/similar to this, and the dotted line/evidence of any changes made in relation to the claimed rounds of feedback etc?

Was this a version that has just been 'tweaked' on the basis of those inside the team (or those stakeholders they chose to consult with) deciding what changes to make, and then effectively the feedback rounds actually just been asking pwme to fill in the questionnaires to run data through a psychometric model to 'validate' by running data against itself.

I'm curious to see what actually unfolded not long after those replies?

A bit like the Chalder scale used for its 'validation', running validity simply by validating against itself ('does the maths work' ie is tired coming out 'tired' on the basis of those we identified as tired based on this) rather than checking it was 'internally/externally valid' by common sense 'does it measure what it needs to measure' having initially gone through the process of working out - given the 180 that needed to have happened vs previously delivered ideologies and treatments/measures - what approximately those measures should be (is this measuring ME and identifying severity or functional issues)?

I'm just trying to get myself up to speed now those answers will be based more on what we have 'seen' vs those earlier discussions on 'what will happen'

 

Thanks @JellyBabyKid

I also want to note that these are also methodological points I make from a professional basis, I'm sure you understood this but it is worth this point of clarification for the context of the thread. ie as someone looking to be a sound professional who would use said insight/understanding into how basic principles and codes of conduct for research would need to adapt for pwme in order to still 'hold'

Just because I can describe the situation in more detail than some of those involved doesn't mean it is anything other than someone who can do insight properly in planning research.

It is particularly pertinent when you think about how low and very low quality the research in this area was when analysed for the Nice guidelines. And how not checking people who were in the 'sample' actually had the condition that was being tested was an issue, nevermind whether the sample was 'representative' of the 'population' things were being claimed for.

Surely those lessons needed to be learned in order that money was no longer wasted.

We already have issues where due to it being 'too hard' those who are most ill with very severe ME are generally excluded, and that becomes just accepted because the timescales or methods etc 'might take too much'. And there are other things we just accept. So more acceptance of further exclusions and really basic orthodoxy on what is accurate means all of these things need to be not just noted in limitations but noted in 'sample' and underlined in claims of 'which population any results apply to'. One can make justifications all over the place based on who a clinic does or doesn't intend to treat but that is just perpetuating the same circle really isn't it.

one simple example over the years is that you can't use the data produced by clinics on outcomes because if they only serve those who don't actually have the condition/provide treatment or attitudes that would be harmful for those who do and the only option available is to 'nod and leave' then that is how we've in the past ended up with a situation where therapists doing short courses believe their treatments have worked.

All of these examples highlighted are real methodological issues therefore that are not only invalidating in a personal way but of the data itself ie invalidating of the presence of that data (either by its accuracy or its being counted or being 'put off').

An overly simplified example would be like having a disease which can put those more ill into wheelchairs and then using methods where that outcome could only be counted if a patient attended a clinic that was on the fourth floor of a building with no lifts. And that 'flaw' being the basis of the beliefs of a group on an illness so that when it was time for an update those who rightly said 'could we have wheelchair access this time so that we aren't excluded from being counted because this is what happened to us' they had been led to believe that was just common sense input. Except got bombast in return which put them off/could put them off from using their voice.

Maybe we do need to re-imagine the 'context' so this can be understood better by those involved as a case study? Maybe if we point out each of these common scenarios and list them one-by-one as some sort of charter that I know, most people wouldn't think you'd need to have to do because they are so obvious, then at least we have a 'common major errors to avoid' and adaptation (that yes might be useful for other conditions in case these problems to proliferate to other areas) for research and data etc.

There are some context-based due to the power/coercion situation created for those with ME in the past (? is it still) that I think also need to be flagged that also equate to basics on research and data collection from my professional experience (non-ME). An example would be that you wouldn't claim to have studied issues in workplaces with a representative sample if you hadn't ensured that in planning your methods of data collection those who might for example not want to answer questions about workplace issues in front of their bosses/leadership teams or colleagues in a way that made that safe. Otherwise eg if you had a focus group where the boss was present you couldn't claim the outcome being that everyone conveniently thought exactly what the boss wanted them to was 'a finding'.

Using bombast to claim 'where is your evidence of harm' to someone flagging that 'as harm' just shows a callous indifference to wanting to control for issues and ensure that you don't cause harm. Which sadly seems to be a differentiator with eg clinical trials done under normal standards due licensing requirements/being regulated (where yellow cards and checking for harm has to be the priority because they aren't in a loophole)

I would have been interested in this professionally and those I reported to would have heard this so I'm quite confused by all of this from a professional standpoint

 

I think the root of the rot may be this sentence:

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?

It muddles trial outcome measures with management in exactly the way the project seems to.
The problem is that so few people understand why there is such a difference. People of S4ME are well versed because they are keen to really understand. For professionals it is often more a matter of being on message and following recipes, sadly.

 

I found this organisation. They have a section on Equality, Diversity and Inclusion, with videos. One by a University of Manchester Biology Professor. Perhaps Sarah knows her.
https://ukrio.org/

 

I don’t think a “core data set” should be generated by data from NHS specialist clinics, because that’s going to be skewed by the fact that very few people attend them, it’s usually the newly-diagnosed, and there are no services for severe or very severe in the NHS. I’ve

I’venever come across a ME service which oversees patients long-term. My local service offers 3 sessions I believe. Another has sessions over 12 weeks. So the idea that this will measure any long-term impacts is, to coin a phrase, “silly”.

 

very nice and writerly

 

Are there any effective PROMS ?

If judged effective , are they actually effective for patients?

In light of the Nice evidence review , clinics seem to be trying to justify their existence.

It needs to be more basic .
What do patients actually need ?
What improves quality of life ? ( From symptom management, financial security to what brings you joy? )
How is effectiveness assessed and monitored ? ( This may be the learning curve as it seems this is the missing bit )

The previous model has an identity crisis, it's struggling to prove relevance .
Sadly we've been through validation by patient participation before where it's the Elastoplast applied to the status quo when a paradigm change is needed .

 

I think that this is a relevant point to look into - albeit trying to make sure we aren't doing work for the sake of it - what indeed the other PROMS are and whether they are context-bound, in association with other forms of measurement (ie if prognosis and progression is measured separately and a PROM is used for specific 'types' of injury or surgery and measures something specific for a specific reason).


I would also be interested to know if there is a 'standard process' for how they are developed, including consultation and usage. And how they are made externally and internally valid rather than merely 'consistent'.

I haven't for example I think seen any talk of calibration externally with eg assessments by the few good biomedical ME consultants on severity to ensure that this would be getting such measurements accurately to these.

I don't fully know what is going on with the different threads re: which one we can write on regarding the general issue of this, which is needed.

I do also agree with it being useful to go back to first principles of what is needed to be 'monitored' - but in a helpful and not harmful way.

Is this being used like some sort of 'added value' scale eg used in schools to 'measure progress' ?


I seem to remember the point being made by the authors when asked the purpose of the PROMS that 'if we don't do it then they [clinics etc] will do it anyway/use whatever measures they want to' type thing. WHich is a valid point. THey will. But of course it shouldn't supercede the position the condition has been left in where basic categorisation and accurate recording of people's condition happens on medical records, misdiagnoses are being flagged where these occur many years on and so on. BUt also basic information to properly inform prognosis data - rather than basing it on eg 'who didn't drop out from the clinic' type thing.

It would be helpful I think for us to list what basics are missing here. And if they are or aren't going to be filled and sorted before or at the same time.

And what gap this should be filling, rather than as a replacement that might short-cut these things if they aren't also listed. As others have said you can't do such prognosis data based on those who attend clinics. If this turns out to be the only data out there.

The old CFS guideline wasn't the only Nice guideline that for example suffered when only one piece of poor research and poor data was allowed to be collected which rather than meaning it was thrown out put 'in charge' those who'd done the rubbish stuff. Same thing with bad habits I've seen of bad data that means worth than nothing being used over blank sheet of paper. And I'm not seeing yet how 'bound' and 'caveated' what is collected will be annotated as.

Particularly given there are old clinics who have even recently attempted to use not only retrospective data, but retrospective 'categories' and 'assessments' to make new claims I do not think that we can assume it won't be used by the same people for attempts at some type of research. And said people not understanding how their behaviour and clinic approach 'filters' [out the illest by drop-outs using krypton factor or by only offering treatment that is worth the exertion of the journey to those who don’t get PEM and don’t have me because they haven’t updated treatment] when they write up their results so that their claims of which patient population is actually represented are accurate

So it is absolutely correct and pertinent that making sure the boundaries of such measures have been defined and the limitations confirmed is being discussed.

I'm separating this slightly from the thread on the actual study because yes in the future we may want to measure PEM. And I note in the MEA discussion of the disability scale being updated they note that due to PEM among other things people may find that they have a number of points on that scale depending on the day etc. So the idea isn't irrelevant and something that shouldn't be discussed. Because theoretically someone could be mild but have extreme symptoms when in PEM or more severe but less so. I'm not sure that is common?