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

I undertook h. pylori treatment recently. For those unfamiliar this involves 7 days of reasonably high dose of two antibiotics, one of which can affect heart rhythm.

According to the Visible app there appears to be a clear dip in my HRV associated with that 7-day period. I experienced the lowest HRV ever recorded in Visible during that time, too.

While I don't claim this is ME/CFS related in any way, it does lead me to believe that HRV is correlated with some health measure. As such I will be on the lookout for the introduction of support for continuous HRV monitoring.

Anything that reduces the reliance on my mind to assist with pacing is pretty compelling.

 

Yeah that's unrealistic. Simply eating while sitting down puts me at 40-50 over my resting heart rate (although it depends which one, my Garmin gives me ~54 while Visible gives me 64, but I only get in the 50's late in the evening and visible is taken in the morning). I'd have to be laying down all the time. And I mean literally all the time.

Maybe that's what it takes to really rest, but it's way too punitive and I'm not in the right environment for this. I just try to keep it below 100 as much as I can, but simply going to the bathroom or brushing my teeth can get me to 120. And too much lying down hurts my back way too much, even just reclining is awful on my back and neck.

 

Yes. Me. I score every morning immediately on waking and record symptoms every night. I recently added to which symptoms I track.

I also message the team with any issues I find.

I have not paid out for premium though, as I just bought a fitness tracker watch for less than twenty quid on amazon and while it doesn't alert me to when my heart rate is over 95, it has been really eye opening, as I have LC as well as ME/CFS

I find the visible score isn't always immediately reflective for me, but it sort of catches up, so it might be measuring the worst of my delayed PEM?

I am holding out for when the data is downloadable to .pdf as that could be useful.

 

Visible recently had the option in my app for me to join as a "founder member" of Visible Plus. I think this might be because I joined the waitlist a little while ago.
(https://makevisible.typeform.com/to/N4colHyW?typeform-source=www.makevisible.com)

This means you get a Polar Verity Sense armband, and I think continuous tracking / monitoring with the armband, which in turns allows the app to give you more accurate / useful pacing guidance.
I think that's how it works.. I'm not really sure.

Anyway, I bit the bullet and paid £180 for the arm band and one year's membership. The armband hasn't arrived yet.
Will keep you updated!

 

Yes, I believe that is the same one. Yea... it works out as £8.33 a month for a year's membership to Visible / connecting it to Visible for a year..

 

I am really liking this gadget. Not only does it do heartrate monitoring, but it will count your spoons for you! I can see exactly how much a given activity takes out of me and I'm looking forward to creating an energy budget.

 

I had the same issues Trish. I'm curious to see if the wearable monitor part that comes with Visible Plus makes any difference to either of those things.
It hasn't arrived yet, should be next week I think.

 

Having used both Visible basic since Feb/Mar this year (I think) and then a couple of months of Premium over the summer, I've binned the whole thing as I didn't see any discernible benefit (for me).

Primarily, when I reflected on my use over a reasonable period, I concluded that I was rarely, if ever really told anything I didn't already know - beyond the initial 'wow' moment on Premium being reminded that everything I did bar sitting motionless on the sofa/in bed, was over exertion.

Whilst I'm only just approaching 4 years which this godforsaken illness, I feel I'm very well tuned into my triggers, symptoms etc. but, I could see how someone who was very new to it all and/or struggling to pace/understand things could benefit for a while to help them focus on the things that are making them worse.

I'm still not sure I can see a long term benefit from it once it's put one on the straight and narrow (and the miserable git in me still feels rather aggrieved at being required to pay for being a Beta tester of an app - but, that's just me..).

Just my view, obviously, I hope others get some benefit from it.

 

Hahaha, to be honest, I'm expecting to have pretty much the same experience!
Let's see..

 

It's not exactly telling me something I didn't already know, but it is making me pay attention to it. I have a tendency (don't we all) to push through when I shouldn't. Being able to see data objectively forces me to pay more attention that just feeling bad. It's also confirmed some intuitions that I dismissed (same activities being more or less taxing on different days) that were just so illogical and frustrating that I gave up trying to manage it, with predictable results.

Being able to see cold hard data is the thing I need to manage better and give me mental reassurance. It takes away the all in my head feeling that being bedridden doesn't. Am I upset that rolling over in bed puts me into exertion? Yes I am. But that's the fault of the illness, not the app. The app forces me to confront this reality and I'm grateful for it.

 

You have summed up my experience too, I've had the pay version for a couple of months and whilst it is a lot for me to spend on my budget I have found it quite useful.

It has shown me that there are days when my heart rate lowers properly when I rest so I feel more confident to do little jobs in between but there are also days when no matter what I do I cannot lower my heart rate so am more careful about my activities. I was never fully aware of this in such detail before.

It has also allowed me to grade activities by how much my heart rate rises for each individual thing, previously I just lumped all exertions together but there is a wide range of responses depending on the type of activity.

I find the interface of the app much easier to use and understand compared to other 'normal' exercise trackers: I've used Vivosmart and Withings before.

The daily score it gives you is less meaningful and I am not relying on that for how I proceed during the day. However part of the reason I decided to pay for the service was to aid their data gathering experiment to hopefully improve the app as time goes on. I am happy to be part of their testing and contribute, (hopefully), to something more concrete.

I have terrible brain fog right now so my ability to explain what I mean isn't great but I hope this makes sense.

 

It makes total sense as it's what I've ben experiencing. So many activities make me feel bad and the badness lasts for so long that I can't tell which activities are the most harmful/taxing except for the really big ones like leaving the house or taking a shower. I am mostly confined to bed and I need to pace the very small stuff. I am seeing that even lying still in bed doing nothing, I am still mostly in the exertion range- that explains so much. When I thought I was resting and not getting better, I wasn't really resting at all.

It's also so much more accurate than the garmin. I'm grateful and so crushed at the same time, as I've been trying to pace diligently with the garmin and just making myself worse. When I get out of bed for the bathroom, the visible shows I am in overexertion and gives me alerts, while the garmin happily chugs along at a normal heartrate. I'm just so crushed that I've inadvertently hurt myself with the garmin telling me activities were safe when they weren't.

Yes, it's much simpler and easier to use, but I find it's a nice complement to the body battery. I can compare and contrast the two readings for a more complete picture. The once daily readings are certainly better than nothing, but they are a bit more general than I really need, like only being able to test your sugar once a day and then trying to figure out which meal you shouldn't have eaten.

My only complaint is that the activity tags aren't really what I need. Go to work?! Take a walk?! I use the eating and drinking tags mostly and ignore the others.

 

I've been using Visible with the Polar Verity Sense armband now for just over a month - my first day with the armband was 6th Oct.
The cost was £131.88 (£11 per month) for 1 years membership of Visible Plus (the paid version of Visible, which you need in order to be able to use the armband), and £50 for the armband. It does seem a bit pricey, given that (I believe) Visible Plus is still in the beta stage (development stage), so we're being asked to pay to beta test a product, which someone else will intend to make a profit from!

I went ahead with it anyway as I was keen to try something that might help me in any way, and also keen to contribute information / data to something that could help ME sufferers generally, even though it does feel weird to pay to do so.

Overall so far I've actually found Visible Plus, with the armband, to be much more helpful than the standard free version without the armband.

The armband is monitoring my heart rate and heart rate variability (HRV) constantly, other than when I'm sleeping - when I'm sleeping the armband is charging in its charger, although it actually charges very quickly.

The app categorizes your heart rate into 3 zones - rest, exertion and over-exertion. It sets the boundaries between each zone according to information from the Workwell Foundation, but you can adjust the boundaries if you need to. I'll put some screenshots at the end of the post as it looks like the pictures are going to be huge when I include them and I'm not sure how to make them smaller.

As the app is tracking your heart-rate over the whole day, you can see in real-time both when specific activities cause your heart-rate to go up or down, and also how it has fluctuated over the course of the day.

The central feature is the "Pace Points" budget. Pace Points are like your energy currency. The more energy you are using - the more "Pace Points" you are spending. A day where you don't move at all will use very few Pace Points, a day where you are very active will use many.
The idea is that you set yourself a Pace Points budget - which is the number of Pace Points / amount of energy or exertion you can safely use in a given day without causing PEM or symptom exacerbation of any kind. You're directed to spend 4 days using the app and armband without a Pace Points budget when you first get them, and by seeing how many Pace Points you use over those 4 days, you can then set a budget for yourself. You can adjust this budget at any time.

As I understand it, this feature is intended to make the concept and implementation of "pacing" much less vague and much more defined and easy to follow.
In the same way that a mobile banking app can track your spending so you can see in real-time if you're going over budget.
This has been incredibly useful for me as before I struggled with pacing - I found it basically impossible to measure and keep track of my energy useage/exertion in any meaningful, precise or useful way, I just had a general sense that I was always doing too much.

In the first 2 or 3 weeks of using the app - I MASSIVELY reduced my normal level of daily activity. (Which was already very low).
This was partly made possible as I started using Visible Plus at the same time as finding out my 2nd PIP application was successful - which actually made it possible for me to cut down the amount I was working hugely.
I hadn't been able to seriously attempt pacing before as I had been unable to stop working for financial reasons!
As I'm self-employed, it has been relatively straight-forward for me to simply reduce the amount of work I take on.
Being able to stay within my Pace Points budget for those 2/3 weeks did seem to very quickly lead to very small but very noticeable improvements in my health & symptoms. I was sleeping better and longer, was able to almost completely stop using painkillers, sometimes had slightly longer windows in the morning morning during which my symptoms were slightly milder, and had a general sense of very slight but real improvement.
I also felt much more stable health-wise, the apparent randomness in severity of symptoms from day to day became much less, and I felt more "in control" - if I stayed within my budget on a given day - I would usually not feel any worse the following day.
This is after a slow but steady worsening of symptoms and M.E generally over the last 5 years or so - during which I had been consistently working too much and unable to pace or stay within safe limits.

Unfortunately about 2 weeks ago I caught some kind of bug, possibly covid, immediately followed by terrible terrible food poisioning, probably the worst food poisoning I've ever had, which definitely stopped any feeling of progress or even stability health-wise!
I'm still recovering from all of that, hoping I can get somewhere stable again soon.
It was interesting to see that with the food poisoning, on the day immediately following a night of throwing up and running to the toilet all night, and therefore not sleeping much, my heart-rate stayed at around 105-110bpm for the entire day, even though I was laying flat in bed all day except for when I got up to go the toilet.
So on that day, I ended up going about 4x over my Pace Points budget, just from the energy / exertion my body was using to whatever it needs to do when you have food poisoning. (My normal resting heart rate is around 62bpm).

Aside from food poisoning, it's been really interesting noticing when and by how much my heart rate jumps up - basically any time I'm standing or even sitting as opposing to laying horizontally in bed - my heart-rate is significantly higher.
Sitting at a desk doing intellectual work, or talking to a friend on the phone and having a good laugh show as using much more energy - consistently higher heart-rate - than laying on my bed with my laptop on my bed-desk watching TV.
I suppose this shouldn't be surprising, but the extent of the difference has really struck me.

The morning stability score also now tracks much more closely to how I actually feel when I wake up in the morning, and then how I go on to feel over the rest of the day, which is interesting and useful. I suppose in a fairly "gamified" way, I'm now really keen to pace really extensively, rest basically all the time, and see if I can get a run of sweet green 5s in the morning stability score.

I'm also now actually doing the evening symptom check-in almost every day (which I wasn't before), as now that the data I'm collecting feels more accurate and precise, I'm more curious to see if there will be correlations between me resting more and pacing better, and trends in symptoms severity.

Overall I've found Visible Plus to be unexpectedly useful and positive - those tiny improvements that I felt from actually pacing in quite an extreme way have given me a lot of motivation to keep doing that, as the feeling of just experiencing slightly less symptoms and feeling slightly less like utter shit in my body all the time is so alluring, based on the little glimpses I've had so far.

Screenshots below.

 

Hi Trish, good questions!
I'll see if I can answer usefully..

Hmm... I actually don't know, but I think so.
I could message the Visible team in the app and ask them, I think they're quite good at responding, as I'm also curious about that, although I'm not sure exactly how to word the question.

I've just checked this, and they use 4 data points for the morning stability score - 2 from the armband (HRV and HR), and 2 self-reported (sleep score and previous evening's symptom check-in scores). There's an article that explains it here - https://www.makevisible.com/blog/introducing-the-morning-stability-score

I'm not totally sure how the pace points and morning stability score relate to each other, but I'd be happy to ask Visible. If you can help me word the question I can send it to them. Something along the lines of "What data is used to generate the Pace Points scores?" or "How is the continuously generated / updated Pace Points score calculated over the course of the day, and from what raw data?"... perhaps?

I'm not sure if the Verity Sense armband is also a step-counter. The Visible app doesn't have any step-counting features, but there is a different app called Polar Flow, which I've just downloaded to see if that will do step counting.. and I can't really tell tbh. Have made an account and started trying to connect my armband to the Polar Flow app but it's not really working.
It's not a wrist-worn monitor or a chest strap but an upper arm band. Or that's how I'm using it at least. So it's up on my bicep. The strap is very adjustable though so I imagine it could be worn higher up or lower down on the arm if preferred.

Oh, also, I've just received this message in the Visible app:

"This hasn't been announced publicly yet, but I wanted you to be the first to know!

- Next week we'll be launching a new in-app research study with one of the leading researchers in Long Covid and ME/CFS, David Putrino.
- The study will look at thousands of data points, to understand how biometrics like HR and HRV are impacted in Long Covid and ME/CFS"