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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...

Actually, point 53 is just bunkum “physical and/or emotional care such as supervising homework…” Surely that’s a cognitive task

The MEAQ seems to be looking for “avoidance” and use of “adaptations” yet the FUNCAP allows for avoidance. Honestly the MEAQ feels like something was reverse-engineered from expected outcomes. FUNCAP feels like it looks into my soul.

I feel like this opinion of Sarah Tyson is a red herring. That's because FUNCAP is asking you to grade based on the past month. So is PROMS. so they are both asking whether you did/could have done *thing*. Im a bit foggy but this seems like a semantics issue rather than say, an actual...

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

It’s Sarah Tyson’s world, we just live in it.

“Flu-like symptoms” does it for me. And certainly, if I were to write using medical language like pharyngitis, lymphadenopathy, cephalagia etc then I’d be getting the eye roll from any Dr who read it! (Sore throat, swollen glands, headache etc) In English, the Latin/ French root of malaise...

I thought she’d said here PROMS was NOT to be used for clinical trials I guess if she found FUNCAP difficult to fill in, she’s speaking on badly of the ME community now?

Off to read, thanks for the update

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...

I feel like the MS PROMS were mentioned earlier in this thread* [the thread mentioned in the first post]

But they didn’t have enough stock for those prescribed it the other year, and it’s been that way for a while. And it’s used for other conditions like PMDD. It’s normal to have a prescription but no chemists can dispense.