Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

Visible has added a monthly self-report item FUNCAP27

I see this questionnaire was discussed here https://www.s4me.info/threads/asses...stionnaire-2023-sommerfelt-et-al.35464/page-2

I thought it was quite good, I scored 3 out of 6 and I’m moderate. Will be interesting to see it over 12 months as I tend to find summer easier and winter a hard slog.

 

Where is that? I haven’t seen this. So far it’s symptom severity but I’m thinking I’m looking in the wrong place.

 

It’s the new monthly thing on the home page. I don’t know if it’s because I’m on the paid version though?

 

It only “appears” on the Home Screen once a month, after that it’s listed in your Profile, just above Health Report PDF

 

Huh. I have no memory of a questionnaire. But I do see previous health reports.

 

I sometimes worry about my memory.

 

The health reports are different, they’re generated from your info.
It should be above health report on the profile page.

Maybe the monthly FUNCAP was rolled out to paid members first? I had trouble with opening it.

 

I did the FUNCAP yesterday and I do remember now. I’m not sure how I feel about it. It says I’ve improved. I’m finding that I’m getting so much information that I don’t really know what to do with.

 

I think the FUNCAP is supposed to gather like 12 months of data, it’s to give a view over time if things vary (or not) we all have better or worse months sometimes.

 

We’re supposed to be able to give the data or health reports to our clinicians - like they care- so they can help us. Good luck with that.

 

I’ve been making an effort to try to do one day per week under my daily allowance. Of course, I could always alter the daily allowance myself, but I know I need to do less, and rest more.
I’m finding that easier than logging every little activity, to be honest. I’ve seen now what each regular activity “costs” I just need to get my general ADL’s reduced (somehow).

 

Yes, I tend to have to “prep” in order to have a “day off”
I don’t know why I thought it would be easy? My allowance is enough to look after myself - wash and dress, put the washing and dishwasher on and empty them, grab snacks and drinks and use the bathroom. It’s not enough to also put stuff away, prepare food, hoover, tidy, take the bins out or anything extra.

 

I suppose it’s useful in a way. I have a guideline which shows what is “too much” whereas usually people assume you’re doing nothing because you don’t work.

 

I can stay under the allowance until I do something wild and crazy like taking a shower. Then all bets are off for a few days. Then there are the random increases in heart rate that send me over the limit just sitting still and sighing. Loudly. I’m thinking it is PEM related.

 

It’s just a crazy revelation, too. Everyone “should” be doing much less than we’d think, for our own good.

 

I’m really curious how Dr. Putrino intends to use the information from the people who volunteered and who use the Visible app.

 

I have to wash my hair otherwise my scalp cracks and bleeds, so I have to wash every day. I wear pyjamas every day, change once after shower. Only have easy food unless someone cooks or delivers. Ignoring the washing just doubles the next days!