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

[rvallee]

So far I've seen mostly good comments. And lots of familiar and friendly professionals seem involved, like Todd Davenport and a few others I noticed. Looks positive so far.

 

[Andy]

Just downloaded it, and I like the fact that you can choose what you want to track. However, instead of tracking fatigue, I want to track energy (or even more precisely 'capacity for exertion'). I appreciate that they can be seen as two sides of the same coin but the distinction is important to me. And I'm sure that this will come down to the individual but I would much rather track 'how much I can do' rather than trying 'how much can't I do'.

 

[Trish]

I think that's at least partly covered in the physical, cognitive and emotional exertion sections.

I'd like to track my fitbit daily step count.

 

[Dancer]

I'm trying this, too. So far (four days) I'm really appreciating the ease (just a quick morning and evening check-in) and the fact I could pick which symptoms I want to monitor most (so it doesn't get too cumbersome). I didn't see anything for orthostatic intolerance - but I'm using "weakness" as my monitor for that - as when the OI is worse, I feel faint and can't stand much.

 

[Trish]

I'd also like something for orthostatic intolerance. Time spent feet on floor (sitting/standing) might be good.

 

[Andy]

I think that's at least partly covered in the physical, cognitive and emotional exertion sections.

There are those options but I think there would be value in the ability to record the perceived capacity for exertion in the morning and then use the exertion ratings in the evening to see if they match or not. This could then help give the user confirmation on whether their perception of capacity is accurate or not.

 

[Trish]

Good idea.

 

[obeat]

From the website

Your health, measured.
Visible Plus uses heart rate, accelerometer and gyroscope data from the Polar Verity Sense™ to gain illness-specific insights.

Measure orthostatic intolerance, time spent upright and more.

 

[Ravn]

Visible Plus uses heart rate, accelerometer and gyroscope data from the Polar Verity Sense™ to gain illness-specific insights.

I wonder how good that sensor is at picking up position. It's normally worn on the upper arm (I couldn't find any indication that Visible are planning on using it differently).

I'm sure it can distinguish between someone standing up and someone lying flat but I think many of us spend a fair bit of time more or less reclined, with feet up, but not necessarily lying flat. What angle of reclined gets picked up as upright versus not upright?

Bateman Horne were using some ankle device for measuring feet on the ground time, presumably because an ankle device is more likely to correctly identify feet up versus feet down.

But maybe an ankle device is not good at picking up HR and HRV and Visible went for a compromise solution rather than requiring people to wear two separate devices?

 

[Mike Dean]

https://www.theguardian.com/society...atient-whos-made-an-app-to-track-its-symptoms

 

[Ravn]

Tried to download the app and got not just one but two error messages. One, "this item isn't available in your country" and two, "this app is not available for your device".

Feeling doubly invisible

 

[SallyC]

I've been using the app for a week or so, (the first 4 days readings calibrate it to you), and it has accurately picked up a crash I'm having from building work going on in my house. I woke up a few days ago feeling awful and it said (paraphrasing) you feel awful! It actually told me my pace score had dropped significantly, which is based on HR and hrv readings. It will be interesting to see how it tracks my improvement. So in theory it can be used as a guide not to risk overdoing it when it tells you your pace score is low.

 

[josepdelafuente]

Have been using it for a couple of weeks - the morning pace score does seem to be a very accurate guide to how terrible I'll feel for that day.
Cautiously impressed so far.

 

[Shadrach Loom]

I’m finding that after forgetting to update it for a day or so it’s just another thing to feel guilty about having left undone. Maybe I need something more ad-hoc. But that wouldn’t allow for the bio-monitoring baseline, which is Visible’s USP.

 

[Trish]

Have been using it for a couple of weeks - the morning pace score does seem to be a very accurate guide to how terrible I'll feel for that day.
Cautiously impressed so far.

I have been doing the checkins since the app came out and so far the Heart Rate variability has not correlated with how I feel. I feel dreadful today and yet it gave me a pace 8 and baseline for heart rate variability, that doesn't track with the energy levels I have today or over the past few weeks.

I'm more in the latter camp. I've been doing it for 2 weeks. Mine seems to bear little relation to how I feel. This morning my pain and exhaustion are worse than the last few days, I have a headache and I slept very badly, yet it scored me 9. Yesterday when I wasn't feeling so bad it scored me 7. I think I need to run it for longer to decide whether it's worth doing for me.

This is in contrast to some other phone HRV apps such as Welltory

I just downloaded the welltory app and tried the HRV - it failed to find my finger that was placed over the camera the same as I do on Visible.

 

[SallyC]

I have now had mixed results from the app, the pace score often says I'm having a better day than I am. But it's in beta and the devs say they are going to adjust the algorithm to improve this as they get more information so I'm going to stick with it for now I think.

 

[Andy]

I have now had mixed results from the app, the pace score often says I'm having a better day than I am. But it's in beta and the devs say they are going to adjust the algorithm to improve this as they get more information so I'm going to stick with it for now I think.

This is my experience as well, on one of my worst days recently it cheerily told me I was doing the best that I have done so far. It almost needs a way to for the user to feedback everyday on how much the apps score matches their experience.

 

[Fizzlou]

I have now had mixed results from the app, the pace score often says I'm having a better day than I am. But it's in beta and the devs say they are going to adjust the algorithm to improve this as they get more information so I'm going to stick with it for now I think.

Also me. Pace scores 7-9 mostly, despite a crash. HRV seems elevated when crashed.

I’ve added customised trackers including my ‘overall function’ so I can see patterns of really bad days to less bad days.

I gave feedback in App about including our own function or them generating a percentage score based on what we inputted. I received a reply that they are looking to do something like that.

I customised certain features like neck and spine pain as it tracks really well for me. I don’t track too many of their core symptoms to reduce effort.

Overall it is easier to use than other Apps I’ve tried and then given up on quickly.

 

[SallyC]

I’ve added customised trackers including my ‘overall function’ so I can see patterns of really bad days to less bad days.

That's a great idea, I'll do that too. Thanks.

 

[Andy]

Is anybody else experiencing regular connection issues that don't seem to be connected to internet/mobile connection?

And the pace scoring clearly lags behind how I actually feel.