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yeah I agree there are 2 aspects 1- managing to do the activity at all, and 2-=the consequences of doing the activity. But I think the frequency is a rough proxy for the consequences because if they were less I would go out more often. I think without negative impact doesn’t quite work...

I wonder if the people at visible would be willing to engage with this @hotblack might be worth asking

I agree that the tracking of steps heart rate time upright should definitely be the standard for recording and would suggest adding hours slept to that, possibly sleeping pattern Then the optional 2 or 3 activities chosen by the individual to reflect their circumstances.

I agree about trialling a treatment But for monitoring my state for non trial purposes for my own information or for eg should any form of individual review with health professionals take place I think to be able to say I could make it out of the house once a week last year but this year it is...

As a moderate person something around frequency of going out of the house is a good indicator of my best level of functioning. But would need some subtlety between “essential” and “social” activity to capture how discretionary for that person . Eg funeral of close family, dental appointment...

Yes good point.@Trish

I agree based on my experience with free Visible that remembering to do it daily is likely to be an issue but I guess even a couple of times a week would be better than not tracking at all? Paper would be just as much of an issue on remembering as a simple app I think. And I’m more likely to...

I sent AFME piece to my MP together with the latest Sean ONeill Times Article. I already told her that it was a bare minimum product so they can say there is a plan. My ME is moderate severity but I would happily forgo what they are proposing for mild & moderate pWME in favour of a proper...

I think that’s probably the one you can do monthly in the free version of visible because I was surprised to read it is 55 questions long.

I think any extended exposure to hot (for here) temperatures makes my symptoms worse. Recent warm days have taken several days to get over. On the other hand when I go to the spa a couple of times a year I do feel some physical benefit from a couple of short spells 15 minutes-ish in the steam...

my gob is smacked

All sorts of voluntary organisations need volunteers. If helping older people doesn’t appeal maybe getting involved with groups working with younger vulnerable people might be an option.

well it isn’t legislative so no parliamentary involvement and it is a niche topic- unlike Sajid Javid who made clear his personal commitment none of the current ministerial team at Health is treating it with anything approaching that. I think it is likely to be either a low key announcement...

Fancy that - condition with no treatment means people are off sick a lot - :rolleyes:

one aspect of psychological state at onset is that many of us especially gradual onset have been dealt with as depressed or anxious rather than as ME/CFS - once ME/CFS diagnosis is given it doesn’t replace the previous diagnosis that remains on your records.

Unless they slip it out during the recess.

I hope that does the job of stopping misunderstanding :thumbup:

Looks good to me @MaudSac

Thanks but I don’t click on any twitter links

Hi @nataliezzz if like me if you’re not on twitter you can only see the first post on a thread so those links don’t function as a way to convey information to me and others in the same position.