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

I used it for a few months and didn't find it especially useful. The stability score isn't particularly accurate, and things don't change much from day-to-day so I stopped logging.

I've been using a WHOOP device for several months, and overall found that my HRV is the most useful measure of how I'm doing. It's not entirely accurate, a single off day doesn't mean too much, but several days of low HRV definitely reflect that I need to rest more. Although second to HRV is the overall strain score, which seems to mostly use pulse, both together are useful. But they frankly mostly reflect how I feel, I can make that assessment myself, but it's definitely useful to have an accurate record that means I don't have to rely on recall of the last several days.

Visible measures HRV, so it has that use, but it only does once in the morning, whereas WHOOP measures it constantly throughout the night. Maybe with the arm band it has the option to continuously measure it?

Also maybe if my condition changed more, if I had good days, I could have more useful data out of it. But I usually only have typical bad days, and worse days, so it isn't much use to me as it is.

Recently I saw some improvement, and started doing a bit of light exercise, overdid it and started getting palpitations. WHOOP reflected this pretty well. But feeling lousy and dizzy is almost as accurate in that regard. Those devices mostly only confirm how we feel, if only the recorded data were used it would be worth using them more. I think that's the idea with Visible, but I haven't heard much about it.

 

Manually From my Fitbit. I have chosen step count ranges to equate to each number they give.

 

Thanks @Trish @rvallee & @NelliePledge

I’ll maybe just stick with my Fitbit 4. It has HR & an overnight HRV.

The free app is interesting and scoring symptoms is probably useful too. But I don’t think I’ll fork out for the monitor and monthly subscription.

Thanks.

 

My Fitbit Charge 4 is on it's last legs mechanically. I looked at the Visible website and all it talks about is the arm strap and HR & HRV monitoring. So I came to the conclusion you still need a watch if you want to count steps/activity. Am I missing something?

I just splashed for a Garmin and it does seem more accurate and responsive on HR (compares to my SpO2 finger monitor). But that in itself will take getting used to as the FitBit seemed to average more and change slowly. I'm often hitting 100 now.

EDIT : And you still need a device to report to you on HR. I can't be looking at my phone all day long!

 

Daughter has a Garmin vivosmart 4 which does hrv and the body battery function is actually quite good

 

I started with the free Visible HRV app. I have been using the more extensive paid app since it came out. Initially it was just a relief to have something affirm what I was experiencing. It also was very helpful in my learning ways to break up activities (dishes, getting dressed) in ways that were less taxing. It was interesting to see my heart rev up when I was sitting and engaged in nothing at all. I think I was watching PEM in real time. It also affirms that his is what is happening when I experience pressure in my chest and breathlessness because MDs just blew me off.

That said, I’m less sure that it was helpful with my larger goal of getting stable. I still haven’t experience the HRV as giving me any useful information. I use a feature that allows me to tag activities and I find that I get an idea of what my day will look like from comparing the same activity (lying in bed, sitting in bed). And I have questions about how the numbers are accrued. It picks up 0.1 pace points randomly. I’ve checked the heart rate agains two other moniters and it is always accurate but the points randomly showing up causes me to take it with a grain of salt.

All that said pacing is all I have and it does help because changing habits of a lifetime is really hard. It helps.

 

I and my sister both had accelerated battery draining on Fitbit Charge 2 a few years ago. We both moved our watches to another account and the battery magically repaired itself and they are still running to this day. I'm guess it was a feature to encourage users to get new watches on that model/SW combination. Of course, your battery may indeed be fading.........

 

I’m using visible plus - I wish they had a forum on their site for people to chat about how they’re getting on!
I’ve been devastated at how much I overexert, I’m so far away from being able to “rest” enough, just due to the usual activities of daily living.the weekly or fortnightly trip out to the shop takes a whole days energy allowance. As does a GP or Hospital trip!
I’m trying to reframe and go “less” over budget. Hopefully I can increase my PIP so I can buy in more help.

 

They do have a FB group. It is very active.

 

Thanks, I don’t Facebook like I don’t tweet!

 

I don't know if anyone else uses it, but I find resting heart rate maps the periods when I'm feeling better or worse—it's the only thing I've found that has any consistent relationship at all. My daily average rises on days when I'm unwell with PEM or a viral illness, and the amount of increase is consistent with the severity of the symptoms.

Obviously I don't need to be told this at the time, but looking back at the trace over weeks or months gives me a picture of whether or not I'm broadly stable. The type of device doesn't seem to matter; neither the measurements nor the pattern changed much when I moved from one to another, only the appearance of the app.

 

My RHR is affected regularly by other issues, it soars then drops, no matter what I’m doing/feeling

 

It provides a rough energy balance . Energy in v energy out . To do this I think it has an algorithm with sleep , stress ( seems to be heart rate linked ) and rest and takes into account how this fluctuates during the day .
I think that theres a learning process involved with algorithm initially ( but could be wrong in this) .
It's not foolproof but generally seems to help with pacing .
ETA , you want to have a positive output.
I am really bad at pacing. I come from a family of " doers" .

I've recently bought a Garmin . Screenshot from mine on body battery below

 

Merged thread

I've noticed this being touted a lot in Facebook in the last few days.

Thoughts?

https://www.makevisible.com/

 

Thanks @Trish. Interesting only just seeing ads appearing on FB. Not gone into the detail of it, but the ad does seem to be saying the right things, at a brief look.