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

Psychometrics refers to the study of the quality of the data obtained. All measurement tools need work to establish that the data they produce is relevant, accurate and reliable. When it comes to implementation in practice/daily life then consideration of their feasibility and acceptability are needed to be credible. I totes recognise that very few measurement tools of any description have completed this rigorous development and evaluation, which isxwhy we wanted to do things properly from the start.

 

I'm not sure there will be a convenient pigeonhole in which to shove me. I'm a physio by background, my main research area has been in stroke and neuro rehabilitation, but I have also worked in other chronic disabling conditions as a methodologist. I generally describe my research approach as a pragmatic mixed methods clinical trialist. Which means I am not attached to any methodological approach. I use whatever methods/designs are needed to best answer the clinical research question. These include rcts, other trial and quantitative methods, movement science, qualitative approaches, epidemiology, systematic reviews and meta-analyses, psychometrics, service evaluations and a little bit of implementation science. One of my main 'lines of enquiry' is/was on the development and implementation of clinical assessment tools. Other top topics are assistive rehabilitation technology; organisation of rehabilitation services and movement science (particularly balance and gait) in neurological conditions.

 

You might find the gait thread of interest, alongside the other ones that MSEsperanza flagged.

https://www.s4me.info/threads/gait-in-me-cfs.32055/

 

As you may have seen from my replies to other posts, the gold standard approach to developing clinical assessment tools is very well known, and has been widely used for years. Obviously not known here or used by people who developed previous ME assessments but there is a world of research outside the ME bubble. My experience of working with Pete on this grant is that he is knowledgeable about these methods and aware of the many dilemmas and uncertainties. He is very far from believing he knows what is needed but is curious and motivated to find out. I am wondering whether the people who are posting the derogatory comments about him have actually met him.

 

Apparently I have not been using the reply function effectively so some of my replies are disconnected from the original post and you may not have spotted it.
I'm curious why you find this paper "not overly encouraging ". It highlights the mismatch between pwMEs needs/priorities/concerns and the content of current measures. It makes the case for co-produced patient-centred new tools. What's not to like?

 

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 wo

 

That was the plan, although given the tone of some posts I'm a tad concerned about how constructive any feedback will be, but nothing ventured nothing gained.

Soz, apparently I haven't been using reply function correctly. I assumed all the quotes and brackets were formatting glitches, we live and learn

 

Xenforo (the forum software) is great if you’ve been using it since the turn of the century, and if your primary device is a steam-powered affair with a mouse and a keyboard. It’s nowhere near as intuitive or mobile-friendly as modern social platforms, though, and everyone has a learning curve with it. I hope you stick around.

 

Can't partake in the discussion atm, but thanks for engaging here @sarahtyson , means a lot.

 

This is my immediate thought too.

 

Good to have you here @sarahtyson

 

Hi @sarahtyson, so pleased that you are on here and that your experience of working with Peter are so positive.

I will repond more when I have time.

 

Thanks @Hutan and Hi @sarahtyson. I'm an (increasingly less!) new patient at just over 2 years. Presumed long COVID -> ME, essentially housebound but able to work half-time from home. I have found wearable technologies helpful to assist pacing. I appreciate the informed comment on the lack of linearity between objective markers of function and subjective dis/cap-ability and symptoms. I don't know how to judge my stabilisation and symptom reduction against the contributions of effective pacing and any partial recovery in whatever the biological pathophysiology is.

Having the device monitoring me in the background is good vs the active effort of, say, a diary. Over the day my resting, average and max HRs are monitored, with an alert if unfavourable. HRV is interesting to observe but I'm not sure it matches usefully for me. By the time it's particularly low I would already feel the physiological 'jitteriness' and note the tachycardia.

Step count, distance and active energy monitoring are low-hanging fruit for staying within my energy envelope. They would be unhelpful for the bedbound person, but suit my situation. Overnight pulse oximetry via the watch has also shown interesting changes over my time. Initially I would apparently have significant overnight desats, but this no longer seems to happen for the last four-six months, last time I assessed (I'll re-check this again).

The other interesting facet of the wearable technology (latest iPhone and Apple Watch in my case) is the walking speed and gait assessment. If you do enough steps it will estimate your projected 6MW: presumably via stride length and walking speed, but also double-support time and some other mobility parameters. I expect this is fairly crude compared to research tools, but the phone's co-processor (gyrometer, accelerometer) might give useful data for a cohort over time, and while not cheap, it's available at scale.

During my ups and downs I was interested to see some of this background data: some I've previously posted here and here. I appreciate your points about limited accuracy with wearables though. I'll be interested to follow your further comments on this thread and wish you the best with a successful project.

 

Edited to add: this & my next post took me 2 hrs to write lol so i now see some of my points have been better expressed already by Trish etc, but i havent the strength to go through & edit/requoite

Ohhh! I read the release differently. See my bolding in the following quote...

i read it as meaning that gold standard techniques were going to be applied to the treatment/monitoring of PwME, & then tools were going to be developed to measure the outcomes for said treatment. Not that the gold standards were going to be applied to the development of the PROMS/toolkit!

So what i thought was happening was that a physio from the Bristol clinic was going to say what the 'gold standard' was for treating/monitoring PwME (from his experience in the clinic) and then an outcome measure was going to be developed to get patient feedback on that.

ie it was going to be yet more of what we've seen before - something which in my vernacular paraphrasing would go something like this ''we have been treating PwME in our clinic for years & we know just how to do it really well (gold standards), so we're going to document that in an official toolkit & we're going to develop some OM (questionnaires etc which are hideously prone to bias) so we can prove how brilliant it is, & then that can be given to all clinicians so everyone is singing from the same hymn sheet."

But i now see that the press release really means that youre going to be
applying 'gold-standard techniques to the development of patient-reported outcome measures'.
Doh! my bad. I misunderstood. Apologies.

And of course as you point out, i dont know much about that. And you clearly do, so i accept & am encouraged by your assurance that tools exist for other conditions which are working well & can be worked with to develop better tools for use with PwME.

I wonder if i am the only one who interpreted the MEA press release that way? Possibly, my congitive function was poor the day i read it.

I should have given the MEA the benefit of the doubt but the whole nightmare & trauma of what has happened over the yrs and the harm that has been done to me has given me a hair trigger. I'll try to be more careful to make sure i understand in future.

So just to clarify my comment about Dr Gladwell/BACME not knowing what the gold standard is but thinking they do....

was about the years of harm done to PwME through clinics while thier clinicians & prominent CBT/GET proponents talk about how they know all about ME/CFS and how to treat it.
Even 'top blokes' can inadvertently do harm (i'm not suggesting that Dr Gladwell himself has done harm, I dont have enough info for that, simply that being a top bloke doesnt mean you cant do harm inadvertently)
- the number of lovely, compassionate well meaning people I met & have communicated with over the yrs, & whose work i have read, who hold to the psychosomatic/deconditioning paradigm of ME, &think it can be reversed with CBT/GET is staggering. And frankly, while i would not want to be derogatory about any of them personally, because i know they would be mortified to think they had harmed anyone & truly believe they are helping, i'm afraid i do feel derogatory about their work, no matter how hard they work or how great they are as people).

And as @Trish commented here

i was really worried because of what we'd seen before in the AfME stuff.

However

(my bolding)Thats great & encouraging.

As i said it wasnt intended to be derogatory about Dr Gladwell himself, & it was based on a misunderstanding of the project, but i do see it can easily be read that way. The validity of criticisism/scepticism about a person's work shouldnt be dependant on having met them personally, but i can see my comment came across as personal & a derogatory comment. I apologise, that wasnt my intent. And its a timely reminder of the fact that when i comment here i am not only talking to friends who know me well & can intuit my tone & intent, (which was worried & concerned rather than derisive) but also strangers and the people i might be commenting about. Its easy to forget & i'll try to be more aware in future.