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

Fainbrog said:
Funny, I was thinking about it earlier today and decided to stop for the same reasons. I’ve just routinely been doing the free app thing but honestly, the patterns are things I am already aware of, have other data being gathered from my Apple Watch and I’m not currently changing anything in my management routine. So, one less thing for me to do.
Click to expand...
I had the paid for armband and also stopped. I found it uncomfortable and logging symptoms tedious. I disliked the interpreted hrv algorithm score, which did not allow for false positive excessive highs which I experience in my pem. I get a direct overnight hrv off my smart watch the trend of which is predictable, once I learned to understand them. I now only track 3 things in a paper filofax.
 
Kiristar said:
I had the paid for armband and also stopped. I found it uncomfortable and logging symptoms tedious. I disliked the interpreted hrv algorithm score, which did not allow for false positive excessive highs which I experience in my pem. I get a direct overnight hrv off my smart watch the trend of which is predictable, once I learned to understand them. I now only track 3 things in a paper filofax.
Click to expand...
When I did the armband, it was a) a pain in the bum because the battery didn’t last more than a day and b) needed me to think a lot about the alert thresholds because my HR is too high just existing and was bouncing off the rev limiter just being sat on the sofa, let alone walking my sorry carcass to the loo or anything daring like that.

I get the idea of it, maybe if I was new to the illness and pacing, but, I feel like I’m a grand master of pacing so they got one month of subs out of me and that was it.
 
Maybe it is because I grew up in an analog world, long before any of this modern self-surveillance tech was available, but I just can't get into all this stuff. I just can't see the value in it. Maybe heart rate monitoring has some limited value. Maybe. But if we don't have any clear biomarkers yet, like diabetics do for example, then what is it we are monitoring?

It all just seems like a dead end to me, at this stage.
 
Sean said:
Maybe it is because I grew up in an analog world, long before any of this modern self-surveillance tech was available, but I just can't get into all this stuff. I just can't see the value in it. Maybe heart rate monitoring has some limited value. Maybe. But if we don't have any clear biomarkers yet, like diabetics do for example, then what is it we are monitoring?

It all just seems like a dead end to me, at this stage.
Click to expand...
Thresholds.
You know like you pace so you don’t “overdo it” well we no longer need sessions with an OT telling us we’ve been overdoing things if we’re tired (silly us!) or reams of rehashed “how to pace” guides.

The whole thing has been automated for us, giving a second by second account of how draining it is for us to, say, sit and listen to an OT blather on about doing things, but not too many things, after 5 minutes sit down, but not for too long etc

I just like having the actual specifics. No more vague “you’ve overdone it” blame, no I haven’t and I’m still tired, guess what it’s the nature of ME.
 
I did my own versions of a lot of what visible does earlier in my ME/CFS journey (logging activity, tracking steps, heart rate, hrv, etc) but stopped. What I learned was useful but as an ongoing thing it wasn’t.

I also have some concerns over visible themselves. These sort of companies usually cash in at some point, that means selling up to another outfit (often a tech or health company) and profiting from the data collected. Data which in this case sick people are often paying a lot to give them. They may have a good founders story to tell, but that’s just part of the pitch and pattern. Maybe I’m being too cynical but we’ve seen it many times.
 
You must log in or register to reply here.
Back
Top Bottom