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I just think they need a better campaign, it’s not going to ”cut through” as you say, and the only box it’s ticking is community involvement.

I’m glad they are doing something, but I’m really fed up of these types of campaigns. I don’t want to share my story, I’m a private citizen and I don’t want to think about my ME journey or what it’s taken from me, in public.Its bad enough in private. Just give me some care. Health, Social, whatever.

They did have a kind of report which got pulled shortly after its launch, I wish they would bring it back. The usual monthly report is always the same for me, top 5 symptoms don't change much.

There is a free app called Bearable which allows you to edit symptoms to suit yourself, and will generate reports from your records. Visible will do this too, pulls things into a graph by symptom or compare two symptoms over a time period. It’s not great at downloading info, you need to CSV...

Visible has 4 in symptoms 1.None 2 mild 3 moderate 4 severe And in a crash Y/N

Nice. I wonder whether they will be writing to Elaros? BACME?

I think the NICE guidance for ME/CFS NG206 is clear on not offering generic courses or treatments for other illnesses to people with ME/CFS because of the risks, as well as clear on exercise not to be advised or undertaken unless agreed and overseen by a physiotherapist/medic. Again, this is...

Hovering isn’t a good thing. Squatting is different and half the world does it. You see footprints on toilet seats sometimes!

Not quite what you asked, but I get occasionally what I called “irritated bladder” and it means I need to keep going every five to ten minutes. Just like cystitis without the burning. After various efforts with daily medications for incontinence (which made it much, much worse) and some...

5 mins maybe 10? It was mainly Montell as a presenter talking to camera, with filmed inserts of a few pwME at home talking about themselves - including a child, a woman who is severe and a man who seems moderate

I think it hit the right tone for what it was there to do.

Why do we need cheery messages?Reading takes energy. I’m already motivated. And the last thing I need as I struggle through trying to batch cook some rice is some bunkum about nourishing myself. I’ve used visible for over 3 years so far. Imagine three years of getting these sort of comments as...

Yeah, I reckon competition is fierce for a slot. Be worth a few bob (££££) for them.

Public sector broadcaster, will be part of their remit. Traditionally, Sunday BBC was Songs of Praise (hymns and church) and it still has Countryfile (wildlife watch, sheepdog trials, etc) and David Attenborough stuff, Antiques Roadshow, so it makes sense they do charity appeals around that...

Oh that sounds like it is based on absolutely zero studies and tells us nothing of use. What is faster heart recovery indicating?I suspect it’s related to - being fit? Is this a training and fitness metric? Why would pwME need or want their heart rate to start recovering quickly anyway though...

I found the “heart rate recovery” thing worrying. Apparently yours is improving? Over the course of a day’s monitoring, I assume it’s recovering because you’re pacing like a sensible person and not following app advice. With Visible most people seem to misunderstand the once-a-day check in...

I suppose AI is only as good as the instructions it has, rubbish in = rubbish out. I honestly feel like it’s not even AI’s fault, it sounds like they’ve found an old Fitbit app and tweaked a few algorithms. It just sounds very much like the start point was a well person and some bits have been...

I wanted to try this out and I haven’t got round to it. Trish this sounds awful - absolutely the worst. Telling people down to the exact step how many steps they should do! Making you have a 15min nap? Telling you you are able to cook any day? This is terrifying, this is like if Visible had an...

That boilerplate is on everything thesedays.

Thank you!