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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.

Menopause is one of “those” things that seems to get the GP’s back up. Nothing worse than going to a GP with a suggestion of what maybe wrong, you’ll end up in a battle of wills where they need to prove you wrong. Also I think I read that when they send you for bloods, the test needs to be...

I wrote that quote, not Bobbler. They may have quoted me when replying. Malaise should never be used interchangeably with fatigue, however people do. Which circles back to my dislike of the word, it’s got negative connotations, it’s got mental ill health connotations, it’s got fatigue...

Can’t wait to see the video when it’s released in a few days

It makes them look paranoid

It is. They decided what they wanted to do, then asked some pwME for feedback. They also engaged here and chose to disregard all feedback. That’s not PPI that’s doing a focus group.

Much better to let them put their silly disclaimer then experience *absolutely zero abuse*

It’s sad when my friends start getting brain fog and poor sleep. It’s like an unspoken dread that they’ll end up like me

I’m happy with the reports which visible spits out, and I can request further CSV symptom data extracts if I wish. I could do that and crunch the data. Absolutely no GP or Consultant would be interested. I think Tyson, Gladwell, want to do what they’ve always done, and we’ll get what we’ve...

I’ve used free trackers like Bearable in the past to track symptoms. I often can’t speak so an app is preferable. There’s an issue with your idea regarding “advice given” as what advice would the NHS give to me?!Manage your symptoms? Try pacing?