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I really, really hope you ge a polite apology. I’m sure they think they’re being brilliantly inclusive. I wonder whether they would be up for paying for and filming CPET test? I doubt it.

Care and support plans https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#assessment-and-care-and-support-planning-by-an-mecfs-specialist-team

Once a year review in primary care is the NICE recommendation https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#review-in-primary-care

Once a year review in primary care is the NICE recommendation https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#review-in-primary-care

I think it would be a good question for the APPG - what about long term 3,5,10 year monitoring of ME? For context, most clinics discharge patients back to GP within a year or less, we’d like to see long-tm updates, data etc.

Delivery plan! https://www.actionforme.org.uk/research-and-campaigns/campaigning-for-change/mecfs-delivery-plan/#:~:text=On%2012%20May%2C%20World%20ME,devolved%20nations%20of%20the%20UK.

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

So THAT’S why they don’t

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...

You need the “baseline assessment tool” and the third tab from left “data sheet” https://www.nice.org.uk/guidance/ng206/resources/baseline-assessment-tool-excel-9265185613

The nice guidance includes a template care and support plan. I started a poll to see if anyone had got one filled in. They hadn’t.

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...

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.

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 -...

Do we really need a “data set” of everything pwME do/can’t do/wont do - at the level of “brushing my teeth” and “made a coffee” I’m not being factious *facetious , I know that Severe and Very Severe pwME would count those as significant. What I mean is I probably have an energy bandwidth and I...

It’s just an excuse. They’re doing the thing they want to do. They want to do PROMS with paper questionnaires they way they want to, that’s all.

You’re supposed to do it monthly for a year, so you see any variations. You’re reflecting on the month just gone, so you’ll have an idea of how demanding the activity has been recently. If you break a task down over days so that it doesn’t impact you for 3 days, you just have to reduce your...

That’s how I say it in my head when I read it too pee eee emm

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...