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

I did raise this at the end and the Physios for ME attending (Nikki Clague Baker and Karen Leslie) agreed this was important.

 

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.

 

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

 

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

 

They probably understand that if you keep using the same system, it effectively is accurate. The scores don't need to be absolute, they only need to show your numbers and your trends.

 

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.

 

ah ok, thanks for correcting me, i have edited my post accordingly

 

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?”

 

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/

 

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.

 

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.

• 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!

 

Funny, though, that there's been no trial of the reliability, accuracy, or usefulness of questionnaires, yet they can be assumed to be a valid clinical tool.

 

Indeed, my step counter, which I use every day, is tediously precise. It keeps telling me that the walk I hoped was 10,000 steps was in fact 8,869 steps. And really I knew it was.