Pacing ourselves: the Visible app

[Barny12]

Very interesting article about a new app - Visible, which is an activity tracker but geared towards illness rather than fitness, mainly, but not exclusively for people suffering from Long Covid but also living with conditions such as chronic fatigue syndrome...and I would say probably applicable to AF sufferers.

Leeming, co-founder and CEO of Visible, said the goal is to help those with these conditions manage their illness – such as the worsening of symptoms after exertion.

"We’ve chosen to focus on Long Covid and ME/CFS. These two illnesses overlap closely; many of the pathological observations of Long Covid, including changes in immune, cardiovascular, metabolic, gastrointestinal, nervous, and autonomic systems, are similar to that observed in ME/CFS. Those with ME/CFS and the majority of those with Long Covid also share a major common symptom, Post-Exertional Symptom Exacerbation."

“It doesn’t happen immediately after you have exerted yourself. It actually happens hours or even days later when your symptoms get worse. So because that feedback loop is so long, it’s very difficult to tell if you’re overdoing it,” he said.

“What we do is we shorten that feedback loop so we tell you much sooner when you need to slow down and when you’re over-exerting to reduce the chance of having a symptom crash.”

“Really what we’re doing with Visible is we’re building the ability to measure these conditions [using] digital biomarkers that will help make these conditions visible – visible to patients so that they can manage their own condition, visible to clinicians, so they can recognise them, and visible to research as well so they can understand them.”

In its current, free, form, Visible is somewhat basic, offering users a morning and evening check-in where symptoms, sleep quality and menstrual cycle can be logged, while the biometrics of heart rate and heart rate variability (HRV) can be measured by placing a finger on the back of the smartphone’s camera lens.

“Research has shown that HRV is reduced in people living with long Covid and ME/CFS, and that it can be a reliable predictor of fatigue severity,” the app notes.

After a few days the app starts to offer a “pace score” to help guide exertion levels, while users can also explore trends in their symptoms.

theguardian.com/society/202...

[CDreamer]

Very interesting - something I will look at - thanks for posting.

[Gumbie_Cat]

This is fascinating, as I seem to use the phrase ‘pacing myself’ more than I’ve ever done. I’m not sure it would work for my A Fib as my Heart Rate Variability shoots up to silly levels.

A great idea though.

[Autumn_Leaves]

I have ME/CFS and I’ve seen the “pacing by numbers” idea that someone came up with using the older type of HR monitor but it didn’t really help or make sense. That was part of the reason I bought my Apple Watch, as a measuring tool. There wasn’t an app available at that time. But ME/CFS doesn’t really follow a linear trend as it’s characteristically fluctuating and unpredictable. It’s just not possible to quantify symptoms like that. I’m witnessing the long Covid people go through all the thought processes, all the disappointments, all the disbelief that “there must be something that can be done for us”, the way the feel when the medical profession say “we just don’t know”. It’s all sadly so familiar. How this approach can work for AF is a bit baffling but perhaps AF might be more quantifiable and measurable. Who knows? All you can do is give it a go.