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

For info - known issues with certain makes of mobile phones:


“Hi Linda,

I’m one of the team at Visible - I hope you don’t mind me reaching out! Since our launch we have become aware that Visible’s morning check-in (the camera-based HRV measurement) doesn't work too well on certain phones. It looks like you have one of the following phones, so may be affected:
Pixel 6/6A/Pro
Galaxy Note 9
We would firstly like to apologise for any difficulties that you might have faced and thank those of you who reached out to make us aware of this issue. While we’re in beta, it’s so important to get this feedback so that we can fix things!
I wanted to let you know that we have temporarily blocked people on these models from receiving Visible updates and from new users with these models signing up for Visible. We hope this will allow us to get to the bottom of this issue and resolve this problem.
We will keep you updated on progress as try to get to the bottom of what is causing this issue. Please feel free to reach out to me with any questions - and once again, thank you so much for your help and patience.”

Exchange of issues then followed. Happy that the tech people are listening to their clients.

 

Um. Probably some filter or processing done on the camera pipeline by those models. The growth of cameras that always produce great-looking pictures involves doing a lot of processing that ends up changing the final image too much. Lots of subtle AI-based post-processing as well.

It's possible that there is a setting for this.

 

I am wondering what people think heart rate variability is telling us in ME?
My understanding is that HRV is reduced all the time in people with autonomic failure so that does not seem relevant. HRV in ME might indicate how often you are doing something very energetic but it seems a pretty strange way to measure that. Maximum heart rate might be more relevant?

 

Yes, I've found that my HRV is generally lower than before illness. On average that difference doesn't look marked, but I no longer hit the highs I used to. I can't make out anything useful day-to-day from its reading compared to how I feel (or subsequently feel over coming days). I'm dubious that HRV can be that useful — as Jo says autonomic failure means it's not able to behave normally, so I would expect a much restricted range of values. Sometimes I feel relatively good, despite a very low reading.

I wonder if HRV could give a warning of impending autonomic issues well before the person becomes symptomatic, with tachycardia etc. That sort of capability could be very helpful if there were an intervention that could arrest the disease establishment (antivirals, pacing, whatever it might be) if identified early.

One other thing that would have been fascinating is a global view of all this data coming off peoples' wrists. I suspect if the phones were reporting hundreds of millions of people, we'd have seen some interesting changes at the population level as the pandemic started and continues its long tail.

Max HR during activities of daily living does seem to match my overall state. Also my resting HR has been following an interesting wave of slow rise and descent over months. I'll see if I can gather some graphs to represent this, similar to the walking data I previously posted.

 

Heart Rate Variability. Healthy prior to Oct 2020.

 

Resting Heart Rate.

 

Yes! It is really frustrating.

 

https://www.youtube.com/watch?v=hGJUe8kVajA

Sunday Conversations May 2023 - Wearable technology with Harry Leeming of Visible

Mass MECFS & FM Association

65 views 24 May 2023

A former engineer, Harry Leeming has worked at multiple early-stage start-ups in Silicon Valley as well as in Formula 1. Harry founded the company Visible (https://www.makevisible.com/), an activity tracking platform for Long COVID and ME/CFS, as a result of his own health condition, and aims to use the platform to help increase our understanding of complex chronic illness. In this edition of Sunday Conversations with MassME, Harry gave a brief overview of the application, with descriptions of the team, their HRV-centered philosophy, and their plans for the rollout of their own wearable device specifically for pacing and symptom tracking. He then took questions from the Zoom audience about the timeline of future releases and features, cost and geographic availability of the premium service, the potential for use in research, various user interface ideas and suggestions, and much more.

 

Moved post responding to a now deleted post that linked this tweet:

Depressing that the Visible lot have focused on exploiting their data rather than looking at ways to improve it.

 

"Patient-led start-up Visible has launched two app-based health studies in collaboration with researchers at Imperial College London.

Since it launched in November 2022, over 30,000 people with Long COVID or myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) have been using the Visible app to find patterns in their illness, and adjust their lifestyles to avoid symptom flare-ups.

Visible is now expanding the app's use by working with researchers from Imperial's Faculty of Medicine to launch two new research studies hosted within the app. From today, users are able to enrol directly into these studies, contributing their anonymised data to help scientists better understand the impact of Long COVID and hopefully help pave the way to finding new treatments."


"Dr Viki Male, an immunologist in the Department of Metabolism, Digestion and Reproduction, is leading a study into the relationship between the menstrual cycle and Long COVID symptoms."


"Christian Morgenstern, an Infectious Disease & Health Economics Researcher at the School of Public Health and MRC Centre for Global Infectious Disease Analysis, leads the second study, investigating the disease's epidemiological properties and economic impact."

https://www.imperial.ac.uk/news/246134/imperial-visible-launch-app-based-health-studies/

 

Oh, fair enough. It took me less time to bail, largely because I couldn’t see any correlation at all between HRV and symptoms, and the default symptoms (which presumably are the ones Imperial will scrape) didn’t describe what I wanted to record.

 

Although I bet that you and I and countless other lapsed users are counted in that 30,000. Note the careful “have been using” in the press release.

Is anyone else on here still using it?

 

Not I

 

I am, but really only for the heart rate variability reading, which seems to have no relation to how I am actually doing, and resting heart rate reading, which seems to have some. I don't pay any attention to the 'stability score', it seems unable to reflect how I'm feeling.

 

I've been using it since April, it's not a life changing app in my experience, but having used for a while, it does start to suggest trends in management. The daily stability score takes a bit to get used to as it measures over a rolling period (I think 7 days), rather than just how you are that day and suggest how stable symptoms are rather than how one actually feels. So, I think, recording a 5 can be interpreted as you feeling like sh*t, but you are consistently sh*t..based on symptoms.

The interesting point I've found is since trying Visible Plus - the subscription model.

I was really reluctant initially, to be paying to be a beta tester of an app, but having seen a few people discussing on Twitter, I thought I'd have a go. It's something like £65 for the first month, which gets you a Polar arm band heart rate monitor and the first month's subscription.

Having connected it, it then continuously measures your HR and based on (I believe) Workwell Foundation HR monitoring guidelines, provides alerts when you are exerting/over exerting.

At this point, the notifications on my phone went nuts! Just existing on the sofa looking at my phone suggested I was over exerting. Which reminded me that I'm not really resting most of the time.

After a (short) while, I turned off the notifications as they were almost constant, so, now, I just periodically check in to see how my days are going.

I think my main observation of Plus, is that basing the alert criteria (the thresholds for which can be changed in the app) reminded me that when I had read the Workwell stuff previously, I was drawn to the fact that having IST and being borderline POTS, my HR will probably always be on the high side, so, some of their guidance re HR monitoring will be somewhat challenging. Even on Propranolol, my HR is still typically >80 and the App measures Exertion as 81-95 bpm and Over Exertion >95..which is typically me, standing.

So, not sure I'll carry on with the subscription more than a month or so, but might keep the Polar band on as it measures continuously, where my Apple Watch is sporadic. However, the Polar arm band has really disappointing battery life, only lasting 24 hours where my watch lasts 4 days.

It is also worth noting this is a developing app, all users are Beta testers, so they are learning from the data we are sharing and from feedback of users. They tend to respond quickly to queries on Twitter and are open to suggestions.

Hopefully my ramblings makes sense and help.