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

[Nightsong]

Between the general cultural risk aversion, regulation & compliance issues and under-funding, adoption of new technologies in the NHS is always sluggish but it's curious that there seems to be such resistance to wearables from some quarters.

About 12 or 13 years ago I did a number of experiments with a simple commercial sleep monitor - effectively a 1-electrode EEG called a "Zeo" from which you could export raw data (long since discontinued) and, vaguely inspired by Gwern's self-experiments, analysed the effects of zopiclone, melatonin and zolpidem on my own sleep & even though there was a fairly high level of noise it was still useful for showing overall trends. Imagine what a well-resourced effort willing to adapt existing & develop novel wearables could do.

But no, it's one intrinsically flawed questionnaire after another.

The last time I was at my local hospital I saw someone struggling with a fax machine so I'm not really hopeful about their ability to embrace technological change.

 

[MrMagoo]

Between the general cultural risk aversion, regulation & compliance issues and under-funding, adoption of new technologies in the NHS is always sluggish but it's curious that there seems to be such resistance to wearables from some quarters.

About 12 or 13 years ago I did a number of experiments with a simple commercial sleep monitor - effectively a 1-electrode EEG called a "Zeo" from which you could export raw data (long since discontinued) and, vaguely inspired by Gwern's self-experiments, analysed the effects of zopiclone, melatonin and zolpidem on my own sleep & even though there was a fairly high level of noise it was still useful for showing overall trends. Imagine what a well-resourced effort willing to adapt existing & develop novel wearables could do.

But no, it's one intrinsically flawed questionnaire after another.

The last time I was at my local hospital I saw someone struggling with a fax machine so I'm not really hopeful about their ability to embrace technological change.

There are certainly pockets of the NHS doing great things with digital innovation. And there’s an overall leadership desire for it.
These PROMS have got a 5 year lifespan, max. In any case, a new ME patient being asked to fill this stuff out is referring to their own wearables - Fitbit/garmin/visible etc to see what they did in the last month.

 

[JemPD]

a new ME patient being asked to fill this stuff out is referring to their own wearables - Fitbit/garmin/visible etc to see what they did in the last month.

i just dont think thats true for everyone, i mean i know lots of people use tech, so it seems to you like everyone does, but lots of people... Dont.

I only got my first smart phone about 6months ago and that was under duress, and nobody i know offline uses a fitbit or similar. I still play music via CDs and watch tv series on dvds rather than streaming. I'm in my 50s, but still, not everyone has gone down the 'tech for everything' route. I wouldnt know where to start with such things.

I am all for wearables for use in these circumstances, i just wanted to point out that contrary to popular opinion, lots of people are not using smart phones etc.

ETA: i dont agree that questionnaires are better though of course, i mean for me to fill in it'd be easier on paper, but results wise i completely agree that wearables would be vastly better. so lol not sure what my point was really!

 

[MrMagoo]

i just dont think thats true for everyone, i mean i know lots of people use tech, so it seems to you like everyone does, but lots of people... Dont.

I only got my first smart phone about 6months ago and that was under duress, and nobody i know offline uses a fitbit or similar. I still play music via CDs and watch tv series on dvds rather than streaming. I'm in my 50s, but still, not everyone has gone down the 'tech for everything' route. I wouldnt know where to start with such things.

I am all for wearables for use in these circumstances, i just wanted to point out that contrary to popular opinion, lots of people are not using smart phones etc.

ETA: i dont agree that questionnaires are better though of course, i mean for me to fill in it'd be easier on paper, but results wise i completely agree that wearables would be vastly better. so lol not sure what my point was really!

I suspect that a majority of people being diagnosed with ME are 20-40 age group, and they are likely to have Apple Watches, fitbits and the like. Visible is also promoting on Social Media now, and isn’t prohibitively expensive. These will be the people entering an NHS ME/CFS service in 2025.

 

[Trish]

Some of us in our 70's have fitbits and smartphones too.

Though I confess I probably wouldn't if I didn't have my daughter in her 40's living with me who does all the tedious stuff of buying them for herself, learning how to use them, and then helping me with mine. I think it's not a matter of experience or intellingence, it's more a matter of mindset, as she grew up with computers and being unafraid of trying things out and exploring uses without worrying she'll break them or mess them up irretrievably.

If I were on my own I probably would be like Jem and only just acquired a smartphone.

 

[MrMagoo]

It’s the “new generation” of recently diagnosed which PROMS will capture, which is a bit interesting as wearables aside, they’re highly likely to have been online and googled the heck out of their symptoms, possible treatments, what is ME/CFS, pacing.

Back in my day, it were all fields around here, no social media or smartphones, we lived in a hole in the ground and we were glad for it, I know my place,took Prof Peter Denton White at his word at my consultation.

 

[bobbler]

It’s the “new generation” of recently diagnosed which PROMS will capture, which is a bit interesting as wearables aside, they’re highly likely to have been online and googled the heck out of their symptoms, possible treatments, what is ME/CFS, pacing.

Back in my day, it were all fields around here, no social media or smartphones, we lived in a hole in the ground and we were glad for it, I know my place,took Prof Peter Denton White at his word at my consultation.

 

[JemPD]

I suspect that a majority of people being diagnosed with ME are 20-40 age group, and they are likely to have Apple Watches, fitbits and the like. Visible is also promoting on Social Media now, and isn’t prohibitively expensive. These will be the people entering an NHS ME/CFS service in 2025.

It’s the “new generation” of recently diagnosed which PROMS will capture, which is a bit interesting as wearables aside, they’re highly likely to have been online and googled the heck out of their symptoms, possible treatments, what is ME/CFS, pacing.

yes good points, i think people dx after 50yrs are in the minority so youre right about the vast maj of new patients entering clinics

Back in my day, it were all fields around here, no social media or smartphones, we lived in a hole in the ground and we were glad for it

 

[alktipping]

Some of us in our 70's have fitbits and smartphones too.

Though I confess I probably wouldn't if I didn't have my daughter in her 40's living with me who does all the tedious stuff of buying them for herself, learning how to use them, and then helping me with mine. I think it's not a matter of experience or intellingence, it's more a matter of mindset, as she grew up with computers and being unafraid of trying things out and exploring uses without worrying she'll break them or mess them up irretrievably.

If I were on my own I probably would be like Jem and only just acquired a smartphone.

I have never owned a mobile phone never mind an expensive smartphone. I always thought that tech at the time was way to intrusive and was exploited by employers .

 

[NelliePledge]

I was early 50s when I got diagnosed - part of the menopause age peak combined with gradual onset not getting picked up leads to diagnosis at a later age

im not super techie im on my second smartphone I keep phones for several years. I did have a laptop but it is obsolete have only used phone or iPad for the last 6 years.

 

[MEMarge]

If much of ST's work has been with strokes, i presume the average age would be higher.
There may also be some problems with using some if paralysed on one side.

 

[Adrian]

Health apps I'm aware of all offer a cholce of android or apple. Don't most smartphones use one of other of these?

Apple is easy there are only a few versions but android is an OS that has to fit a wide range of different hardware platforms (with a wide range of costs and hence capabilities - like different accelerometer chips)

 

[SNT Gatchaman]

I only got my first smart phone about 6months ago and that was under duress, and nobody i know offline uses a fitbit or similar. I still play music via CDs and watch tv series on dvds rather than streaming. I'm in my 50s, but still, not everyone has gone down the 'tech for everything' route. I wouldnt know where to start with such things.

Some of us in our 70's have fitbits and smartphones too.

Though I confess I probably wouldn't if I didn't have my daughter in her 40's living with me who does all the tedious stuff of buying them for herself, learning how to use them, and then helping me with mine. I think it's not a matter of experience or intellingence, it's more a matter of mindset, as she grew up with computers and being unafraid of trying things out and exploring uses without worrying she'll break them or mess them up irretrievably.

Douglas Adams has this covered.

I've come up with a set of rules that describe our reactions to technologies:

1. Anything that is in the world when you’re born is normal and ordinary and is just a natural part of the way the world works.
2. Anything that's invented between when you’re fifteen and thirty-five is new and exciting and revolutionary and you can probably get a career in it.
3. Anything invented after you're thirty-five is against the natural order of things.​

― Douglas Adams, The Salmon of Doubt: Hitchhiking the Galaxy One Last Time​

 

[FMMM1]

If I was assessing these interventions, i.e. to assess whether it was appropriate to fund them, then I'd try to:

• assess economic benefit -- if people recover and are able to return to work, increase hours worked to "normal" level, then that's an economic benefit. I'd look at "economic" indicators like participation in work, or education, say 1, 2 -- years after intervention (outcomes). I'd also incorporate actimetry FitBit type devices - that way you'd look at whether activity has actually increased;
• [much lower scoring] look at how patients scored it subjectively --- OK but if it isn't providing (objective) economic benefit (first bullet point) then is this "nice to have?" but not actually a good enough reason to fund the intervention? After all there are other options --- assess things like home help as an alterative -- @Snow Leopard suggested that you give it to the patients/let them participate in deciding how £x should be spent to improve their quality of life!

I'd best not share what comes to mind re the approach by the charity -- a waste of £90K doesn't really cover it!

 

[MrMagoo]

I mean, the wearables debate is a debate, but frankly I’m not convinced by Tyson’s arguments as to them not being an option. I note in the Newcastle pilot the NHS gave a wearable to participants, some even if you don’t use them or a smartphone, you could be given it to try out.

Which circles back to the PROMS - what are they for? I don’t see how they’re fit for purpose for pwME, but nothing really is, is it? We’ve only got management, not treatments. And these questionnaires, how do they follow the “patient journey”? Most of the NHS ME/CFS clinics I’m aware of pretty much see you for 3-6 months then discharge you. Are any of them seeing patients on an ongoing basis?
So you do the PROMS for your 1st session homework, have 6 sessions of cbt and a chat with a physio then 3 months later you do PROMS again, don’t let the door hit you on the way out.

 

[alktipping]

I mean, the wearables debate is a debate, but frankly I’m not convinced by Tyson’s arguments as to them not being an option. I note in the Newcastle pilot the NHS gave a wearable to participants, some even if you don’t use them or a smartphone, you could be given it to try out.

Which circles back to the PROMS - what are they for? I don’t see how they’re fit for purpose for pwME, but nothing really is, is it? We’ve only got management, not treatments. And these questionnaires, how do they follow the “patient journey”? Most of the NHS ME/CFS clinics I’m aware of pretty much see you for 3-6 months then discharge you. Are any of them seeing patients on an ongoing basis?
So you do the PROMS for your 1st session homework, have 6 sessions of cbt and a chat with a physio then 3 months later you do PROMS again, don’t let the door hit you on the way out.

performative box ticking medicine at its worst.

 

[FMMM1]

don’t let the door hit you on the way out

Yea - by even checking employment status/participation in education post 6 months, year --- you'd pick up that this wasn't delivering!

 

[MrMagoo]

Yea - by even checking employment status/participation in education post 6 months, year --- you pick that this wasn't delivering!

So THAT’S why they don’t

 

[bobbler]

So THAT’S why they don’t

Indeed. I think it needs to be 2 and 3yrs for these however because

If you can get reduced hours quickly enough
That might result in you not ended up so ill you never work again long term

but if they focus on anything under 2yrs you can imagine people getting bullied into not being helped to reduce their hours (resulting in worse disability after due to this) because they want ‘full time’ on their results for their patients and not part time. And don’t care about what won’t be measured and know people can’t be put through capability process that fast so the whole thing might get played.

I think measuring 3yr + outcome as the measure is key with whether adjustments were made in that interim time being the independent variable (reduce hours early enough they mightnt get as disabled)

 

[MrMagoo]

Indeed. I think it needs to be 2 and 3yrs for these however because

If you can get reduced hours quickly enough
That might result in you not ended up so ill you never work again long term

but if they focus on anything under 2yrs you can imagine people getting bullied into not being helped to reduce their hours (resulting in worse disability after due to this) because they want ‘full time’ on their results for their patients and not part time. And don’t care about what won’t be measured and know people can’t be put through capability process that fast so the whole thing might get played.

I think measuring 3yr + outcome as the measure is key with whether adjustments were made in that interim time being the independent variable (reduce hours early enough they mightnt get as disabled)

Well how about they check up on us every year, once a year, say for 5 years?