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

Trish said:
No, we need other ways of taking that into account. There are quick tests that can show cognitive fatigue, I think, which could be useful eg how many of a sequence of digits such as a phone number you can recall after reading them.
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I did raise this at the end and the Physios for ME attending (Nikki Clague Baker and Karen Leslie) agreed this was important.
 
Trish said:
Of course, especially if worn on the dominant wrist. There are ways to get around this, either by wearing on the waist or thigh, or by taking into account that the wearable is recording arm movements including steps. I find it useful, for example that getting dressed and undressed records as steps, and for me is a physically demanding activity.
I agree, playing the piano is energetic activity, and it's fine that it's recorded.

These quibbles seem so minor compared with the subjectivity of PROMs, but Sarah didn't even mention the problems with PROM subjectivity, as far as I remember, and she has said on this thread, wrongly, that they provide objective data.
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I totally agree that any physical activity, not just steps, is important and good to record.
Also changes in heart-rate are relevant for those with POTS/orthostatic intolerance.
My daughter's heart-rate goes ridiculously high when sitting watching an exciting 6 nations rugby match on TV.
 
Adrian said:
I was talking to someone recently who was commenting on various medical recording apps and the very poor security/privacy they seem to have. So this can be a real issue.

Generally, wearables won't have medical certifications but I think with using them along side PROMs we are talking about indicative information for anything clinical rather than as detailed accurate assured info. (but the security questions here worry me as that also raises quality issues).

If such mechanisms are used in research then a good data scientist will have an understanding of dealing with error ranges on incoming data and what can be accurately derived (although any statistician making claims from PROMs doesn't seem to have this type of appreciation).

The other issue is if an app is being used on say peoples smart phones (and this can do a lot of monitoring) then there are difficulties across different hardware and OS platforms which could lead to issues,
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Dr David Putrino is using the Visible data, I’ve given the researchers permission to use mine.
Visible has a mix, there’s the RHR/HRV monitoring but there’s also the self reporting -activity, daily symptoms, monthly FUNCAP
 
If there’s a strong argument that wearables aren’t accurate why are monitors used in elite sports, cycling, football etc


And I make the point that for monitoring an individual the trends for that individual up or down are likely more important than the number.
 
NelliePledge said:
And I make the point that for monitoring an individual the trends for that individual up or down are likely more important than the number.
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Havent i seen somewhere upthread? that Sarah said something similar to that but about the questionaires - it was i think in response to @Trish or @Hutan ??? or maybe someone else but i recall it was before the 'dont be silly' outburst & was in regard to some comment on different people interpreting questions differently and the point she was making was that it didnt matter because peoples results would be compared to their own previous results so the different in interpretation between diff people wouldnt be a problem.

whats good for the goose....

ETA: i was mistaken see Trish's post below, must have got confused with something else, apologies
 
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JemPD said:
Havent i seen somewhere upthread? that Sarah said something similar to that but about the questionaires - it was i think in response to @Trish or @Hutan ??? or maybe someone else but i recall it was before the 'dont be silly' outburst & was in regard to some comment on different people interpreting questions differently and the point she was making was that it didnt matter because peoples results would be compared to their own previous results so the different in interpretation between diff people wouldnt be a problem.

whats good for the goose....
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I think Sarah's point was a bit different. She was responding to my questioning the level of exertion that participants were asked to rate as strenuous to mild, or something like that rather than specifying types of activities as benchmarks. I raised the issue of a person whose ME deteriorates rating walking 1000 metres as strenous when mild, and 10 metres as strenous when severe, so even for an individual the benchmarks shift, but the scores are unchanged. You're not even comparing yourself with yourself between time points.
 
I've been watching some cycling road racing. The professional cyclists are monitored continuously for heart rate, speed, effort, etc. They clearly find them accurate enough. Why can't we?
Coming back to this discussion is like stepping back 50 years.
 
Trish said:
I think Sarah's point was a bit different. She was responding to my questioning the level of exertion that participants were asked to rate as strenuous to mild, or something like that rather than specifying types of activities as benchmarks. I raised the issue of a person whose ME deteriorates rating walking 1000 metres as strenous when mild, and 10 metres as strenous when severe, so even for an individual the benchmarks shift, but the scores are unchanged. You're not even comparing yourself with yourself between time points.
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ah ok, thanks for correcting me, i have edited my post accordingly
 
Kitty said:
I'm suspicious about the motives behind the assertion that technology isn't acceptable to the NHS because of accuracy, privacy, or whatever. Not least because it seems perfectly acceptable in other contexts.

Thing is, results from a step counter are so much harder to fudge than responses to questionnaires.
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But the point I made earlier is that the NHS is looking at wearables, there have been pilot studies on FATIGUE for patients with Parkinson’s etc with wearables.

I’m not buying Sarah Tyson’s “when you get into it wearables aren’t really allowed in the NHS because reasons”

And I think there’s a clear set of expected outcomes, and the PROMS are just being reverse-engineered from there, hence why the whole project is shifty, with “silly” explanaitions to straightforward enquiries like - “why not use existing validated FUNCAP questionnaire?”
 
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MrMagoo said:
I was reminded of an earlier post by Sarah Tyson that she said wearables aren’t actually possible to use in the NHS, none met the regs of the appropriate regulator or some such.
But a quick Google shows a lot of NHS trusts piloting wearables, and the NHS long term plan includes use of wearables
https://www.england.nhs.uk/long-read/medical-devices-and-digital-tools/

This pilot for wearables for patients with Parkinson’s, IBD etc on FATIGUE and how that is the main symptom which affects quality of life!
https://www.newcastle-hospitals.nhs...tigue-and-disturbed-sleep-in-chronic-disease/
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Yip - particularly when the NHS is using already trialling/using them then they can't exactly be fringe! There was also research in Aberdeen University* and I'm sure umpteen research projects throughout the world - presumably the NHS Parkinson’s project is modelled on (Parkinson’s) projects elsewhere!
[EDIT - I hadn't read your subsequent post when I posted the above]

*https://www.abdn.ac.uk/news/16714/
 
FMMM1 said:
Yip - particularly when the NHS is using already trialling/using them then they can't exactly be fringe!
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Ha, that's probably an unsafe assumption, given the NHS is trialling the Lightning Process.

But, for sure, wearables are being used in a whole range of health contexts around the world and it's widely recognised that they provide advantages in data accuracy that questionnaires do not. Perhaps more research is required to work out an approach that suits the NHS and ME/CFS, in which case, fund those studies.
 
MrMagoo said:
But the point I made earlier is that the NHS is looking at wearables, there have been pilot studies on FATIGUE for patients with Parkinson’s etc with wearables.
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Exactly, that's what I meant about using them in other contexts.

More than one GP at our surgery has suggested using them for activity and heart rate monitoring, and the afib alerts I kept getting for a few months—which it would be easy to be sceptical about in consumer electronics—were taken entirely seriously. They said that if I'd never had warnings before and neither the software nor OS had been updated, it was likely there was something going on even if it wasn't true atrial fibrillation.
 
Hutan said:
Ha, that's probably an unsafe assumption, given the NHS is trialling the Lightning Process.
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I'd expect there are @Jonathan Edwards types - trying to provide better outcomes (and getting frustrated!). But yes, we need the charities to challenge the Government re funding the lighting process (e.g. reciting NICE's damming analysis - part of ME/CFS review) - Governments can delegate work but not responsibility i.e. for the funding of the lighting process.

Hutan said:
But, for sure, wearables are being used in a whole range of health contexts around the world and it's widely recognised that they provide advantages in data accuracy that questionnaires do not. Perhaps more research is required to work out an approach that suits the NHS and ME/CFS, in which case, fund those studies.
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  • NHS Parkinson's - as you state - likely replicates methods developed/proven elsewhere --- hardly cutting edge!
  • OK application to ME/CFS might involve looking at the outcome of the study in Aberdeen - again not cutting edge!
But yes, I agree, a grant may be necessary to do a trial - surely the research bodies should be looking at this - again, one for ME/CFS charities. Jonathan mentioned that the MRC group he sat on, which identified GWAS/DecodeME as a opportunity, also identified actimetry/sleep studies --- so this has been kicking around a while!
 
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