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

The main data collection will be open to people with ME, whether they are, or have been patients of ME services, or not. It is important to understand that the purpose of this study is not to assess the effectiveness of, or satisfaction with ME services (or otherwise) but to develop the means of doing so. The next stage is to use the measurement tools to detail pwME's difficulties and needs, evaluate (and support development of) services

 

Yep, that's the idea. I appreciate you are sceptical, but assuming your experience is limited to ME, then you won't have experience of well-developed, psychometrically robust measurement tools so it perhaps not surprising. My experience of doing so in other conditions is that its possible and helpful. Using 'wearables' and activity monitors seems so obvious, doesn't it? Except when one looks at the detail - they aren't terribly accurate or reliable; it is far from clear which parameter should be measured for whom, when, or how or how the data should be interpreted. Also it is overly simplistic to assume the relationships between pathology; impairment and activity are linear (although I can fully see the attraction of the idea) - in ME or any other complex, multi-faceted disabling condition. So even when we do find a biomarker or physiological marker, and monitor how they change, that will not directly relate to changes in what one is able to do or how one feels. Sorry.

 

If you mean Isle of Man, I think they are mentioned in the context of having a combined ME/CFS and LC service, unlike in some other places where services, if they exist, are separate.

What have the Isle of Man got to do with it? Well ..... Juan Corlett is the Chair of the Isle of Man ME Support. Over many years, IoM ME Support have been working with Manx Care (the IoM health service) to develop a ME service for the IoM. Pragmatically, long-covid has recently been added in to the mix becuase, you know the pandemic. They have developed constructive, collaborative working relationships with all parties, drawn on best practice, and applied the NICE Guidelines to produce an exemplar service. I know Juan through a family friend who is a relative of Juan's. Conversations between us, and then members of Manx Care were the catalyst for this project. Juan is a co-applicant because of his personal experience of ME, exceptional leadership and managerial skills, and experience and know-how of working with multiple agencies to develop services.

 

I've had a quick look at Dr Mike Horton and notice this one as a recent paper he was contributor on.

Does this give a sense of what he/you as a group might be looking at doing here with ME/CFS re: the psychometric type scales?

https://www.s4me.info/threads/the-m...d-or-post-covid-19-syndrome-2022-sivan.27803/

 

No, the gold standard "trope" does not mean EBM. The gold standard to which I refer is the US FDA recommendations for the development of PROMS. These have been accepted and widely used for years. You see, there is a wider research world than just the PACE trial and ME. I realise you, and other posters may not be familiar with the methods I am proposing to use, but that does not mean they are without merit or worthy of derision.
I'm afraid I don't understand the rest of the post "Which, yeah, basically means "plastic-painted gold tchotchke" than actual gold-plated. So much marketing and hype in this profession. They take the absolute least reliable, most biased and ineffective, methodology known and call it "gold plated" as if it means anything. It's made to look expensive, and it is, but it is strictly ornamental."
Perhaps you could explain what your objection is, and why you feel my work is "plastic-painted gold tchotchke ... So much marketing and hype in this profession.... and the absolute least reliable, most biased and ineffective, methodology known". Ive been called many things in my life, but a "fake gold academic" and '"purely ornamental" are novelties, could you justify them please?

 

I fully accept the logic of your views, I have spent a good deal of my previous life working through the detail of such thoughts/hopes/expectations. It would be great if they could be fulfilled, but the reality is that, at present there are no reliable, accurate devices that provide the right type of data, that can be easily and quickly downloaded, and interpreted to inform clinical decision-making. Believe me - I have looked, a lot for a long time. Maybe there will be one day, but in the meantime .....

 

Hi @sarahtyson & welcome to the forum.

Great to have you -- as an expert who's also a person with ME/CFS and a carer -- on the forum engaging with this important discussion.

Not able to add much now but you might be interested in previous discussions on the forum -- we have several threads on related topics.

Don't want to post too many links now but the most relevant I think are these:

https://www.s4me.info/threads/bias-due-to-a-lack-of-blinding-a-discussion.11429/

https://www.s4me.info/threads/which-outcome-measures-are-most-important-for-clinical-trials.29829/ (members only)

More discussions related to the issue can be found using the tag search, e.g.:


https://www.s4me.info/tags/outcome-measures/

https://www.s4me.info/tags/subjective-outcomes/

Edit: These are mostly related to clinical trials but I think similar bias and thus observable discrepancies between objective and subjective measurements will also apply for the purpose discussed here? And can't simply be explained with objective measures being not reliable?

 

Mike leads the Leeds Psychometric Lab. He is the world's 'go to' expert on Rasch analysis. This is the statistical approach we will use to assess the psychometrics of the measurement tools. He and I have worked together for years to develop several clinical measurement tools. He is a top bloke. He has no involvement in the ME world. His role is to do the stats, he is blissfully independent of the whole ME baggage thing and long may he remain so. He collaborated with Manoj Svan et al, playing a similar role in the development of the Covid-19 Rehab tool.

 

Agreed. I think that airing valid concerns on the basis of what has tended to happen historically isn't something that should raise an eyebrow when past history has shown the norm means these things are likely and need to be therefore raised and noted to at least note foreseeability issues. I this instance the PPI group was BACME is post-2021 guideline in timing so obviously pertinent as a potential likelihood.

I don't think an organisation that has been 'problematic in the past' are appropriate if they are demanding trust or being aghast at questions based on making sure it is different from the past and thinking it is strange rather than sensible - whatever the cohort was be it pwme or a completely different sector and group of people.

I would expect/hope anyone getting into this area could be understanding this reassurance isn't a strange 'special request' but seems something that does need to be checked 'isn't the same as it has been previously'. Sorry [to future researchers] needs to come from the predecessors and past behaviour/research really rather than it being something for pwme to be apologising for being put in the position where they have to, and should, ask.

And I do think that any group for anything in any sector asking questions checking that if patient involvement is going to be claimed what it actually consists of and is it representative etc wouldn't be unusual, but when so many landmines/hitches/cracks have been unveiled over the years in some ways this has been done in the past it would indeed be sensible to make it an open topic of conversation?

It is sort of one of 'the big things' about where ME/CFS research needs to be heading in including really representative patient input actually driving/leading (rather than feeding back with at best ability to make tweaks after something decided) and looking at how those more severe can actually be properly represented given the spectrum is key in understanding the condition, and making sure that even research nevermind services/treatment are accessible and appropriate. So I would expect it not to raise eyebrows anyway given where you'd hope cutting edge research would set it sights re: this sort of aspect being updated vs the old (or even other conditions).

Paternalism has been a big issue historically for ME/CFS, and still is, even 'within the community' sometimes, and I can't think of another way of this being kept under control without a good way of ensuring patient representation is broad and properly representative and weighted.

I do feel reassured at the comment noting that it won't just be looking at people signed up to clinics, and specifically that being because it needs those pwme who have longer experience of the condition - given we've all probably done the 'thinking we've cracked it' at various points only to find out there is more to the rollercoaster etc.

 

Im not sure who are institutions to which you refer but, I read this post out to my family. The thought of me being anybody's 'pet patient" or that I will not "be challenging" has raised a giggle, so thank you. I realise there is a lot of baggage for everyone whenever ME is mentioned. You probably wont be surprised to know that some BACME members also have historical concerns, war wounds and cynicisms. Tbh I'm not terribly interested in the history, my focus (and the rest of the team) is to work constructively with all parties to develop and improve services and thus pwME's experiences. The times have changes, it is time to move forward.

 

Hi Sarah,

Nice to see you here and thanks for contributing and telling us about your background and experiences.

Just so that I can contextualise this could you confirm what 'field' you are coming from when you are mentioning that this is better for 'offering effective services'.

I think knowing 'which services' the focus is perhaps helps to note here, as I assume these will be the measure of those? and their 'effectiveness' etc


I say this because many of us think in terms of medical care, and clinics being monitoring the condition and their health medically as well as potentially other forms of adjustment/support

It might be useful to somewhat 'itemise' which specific bits within this such PROMS aim to cover/measure? And are these things that e.g. a clinic would use to demonstrate 'usefulness' or 'where the money has gone', or are they more akin to the old-style satisfaction or improvement/recovery usage of such data?

 

Thanks Sarah,

I did do a quick read of his page and noted these things - and nice to have you confirm he is a top bloke and you know him well. I assumed his focus on this would, as those papers were, be the psychometric scale part. I thought it would be nice to get a sense of what the 'psychometric' would focus on, hence looking up his research - I have a psychology background, so I'm aware that this can be a pretty broad area in applicability/context (eg as far as things used for job interviews or air traffic control). But note his background in exercise science and health/medicine but recent focus on the stats stuff so didn't know how much to assume re: that

Am I right in taking from your answer that what you mean is that he is 'a fresh start' so the data and measures from him would start from scratch rather than drawing on past psychometrics he might have worked on with others in other contexts? and be driven by your starting from fresh as your own team - and wouldn't be building on other scales in similar literatures?

Or, if it is going to be drawn on, I'd be interested in answers re: my question was about the recent study he was involved in, that was about Covid-19, but specifically Long Covid/Post-covid (The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID-19 syndrome)
- which seems to have measures in it too, so it would be good to know if it is this sort of thing that would give us a 'flavour' of what might be being looked at in that area?

The paper itself is here: https://pubmed.ncbi.nlm.nih.gov/35603810/

and there is also one focused on the psychometric analysis here: https://pubmed.ncbi.nlm.nih.gov/34676578/

which has the following quote in its abstract:

So I did wonder whether given this, the psychometrics might be for this project likely to be along similar types of lines/these papers might provide some flavour etc?

I'm sure that you can see why it is an obvious and straightforward question in my mind to ask, even just given how literature often works (building on other existing scales in similar areas) - is this study and its scales/measures similar or going to be any type of starting point for yours?

 

Maybe a difference is that talking about RA symptom and coping with the disease and treatments is not as 'complex' as talking about ME/CFS symptoms and coping. Talking about PEM is difficult as is talking about coping/ pacing -- just recalling and giving an account of all the things that matter to me with regard to coping with my illness is very exhausting.

So a good assessment tool maybe could help.

Agree that it's crucial that assessment happening in clinical service must not be used to measure treatment/ coping effectiveness or service quality. Without a control group that's not possible. Yet my experience in rehabilitation clinics in Germany is that they do exactly this. Which can lead to clinic staff manipulating patients' assessment -- as happened to me so that medical discharge reports were not only wrong but also meant it needed another decade before my severe disability and incapacity for work was officially acknowledged -- with dire consequences for me.

 

Could you give examples?

I don't get why you need psychometric measurement tools for monitoring patients with ME/CFS.

I think a smart symptoms/ activity diary could be helpful if doesn't need too much time to fill in?

Also with regard to wearables, I agree they have to be validated / adjusted for ME/CFS, but there has been so much progress in the development of them -- why not prioritize adjustment / validation of wearables instead of psychometrics?

 

I and the rest of the team will work with the pwME and clinician advisory groups to develop draft tools. We will collect data using them via electronic surveys. Mike will complete Rasch analyses on the data and then we - me, him, research team, advisory groups will decide how/whether to revise them to ensure constructive and content validity.

 

As I've explained in previous posts, activity monitored could be useful if they worked. And maybe one day they will. But at present there isn't anything that is usable at a service level.

As for examples, in my research page at UoM there are links to the projects I have done in stroke, neuro rehab, musculo-skeletal and rheumatoid conditions, chronic pulmonary conditions, children's major trauma. Take your pick.

 

This would best be addressed by @rvallee . You’ve quoted my weak pun in reply to his post, thus tagging me rather than him.