An app for Long Covid

What gets measured gets managed

It might feel like Covid is over. As Christmas approaches case rates are down, hardly anyone wears a mask on public transport and many assume that a positive test just means a couple of days of a cough or a sore throat which needn’t even keep you off work.

But tell that to Harry Leeming, just one among what he says are 100 million people worldwide who are suffering from long Covid. Two years after what seemed a mild case at the beginning of the second wave of the pandemic, he’s still laid low by a whole range of debilitating symptoms - “I have chest pain, nausea, weakness, I've got issues with my memory.”

But amidst his exhaustion there is also anger about what Harry regards as a dismissive attitude to long Covid and other post-viral conditions such as ME. That’s why he’s launching an app called Visible, its name summing up what he wants it to do - make the people with these conditions visible to doctors and to researchers so that new treatments can be found.

Harry Leeming was just 29 when he got Covid, a fit young man working as a product manager for a London fintech company - “I would climb mountains, I would go bicycling. I was essentially in great health.” He recovered quickly but after a few days back at work, started to feel “not quite right’ and it was downhill from there.

Soon, suffering from constant exhaustion, he’d moved back in with his parents and a little while later he took himself to A&E: “I start getting very severe heart palpitations, massive fluctuations in my blood pressure. and this real feeling of being poisoned.” But his tests all came back normal and the doctors said that it was all in his head. “One of them said they felt the same way before they went into their medical exams.”

He tried all sorts of things, including cognitive behavioural therapy and something called graded exercise - ”which put me back in hospital.” It is now accepted that heavy exercise is just what someone with long Covid does not need. But it was the Apple Watch he wore to track this exercise regime which finally convinced the doctors that he was ill.

It also recorded his heart rate, which was worryingly erratic : “I could see that my body wasn't reacting properly to changes in posture. If I went from lying down to standing up, my heart rate would shoot up to 150.” The Visible app aims to help users monitor their HRV - Heart Variability Rate - which is a good measure of the severity of their condition:

“HRV has been shown to inversely correlate with symptom severity. So if you have low HRV, your symptoms will be worse, if you have a high HRV they’ll be better. So it's actually a really good objective marker of how well you're doing.”

The Visible app allows users to monitor their heart rate variability

The app is free but Harry and the colleague from work who is his cofounder are aiming to bring out a wearable device early next year for which users will pay a subscription fee. It will stream your heart rate to your phone so that you can be told to slow down if you are over-exerting yourself. A strategy known as pacing, a careful balance between rest and exertion, is thought to offer some hope of lessening the symptoms of long Covid. The hope is that any data that Visible users agree to share with researchers could help doctors understand and treat the condition

Visible has just announced that it’s raised $1 million from venture capital backers - the idea of using apps and wearable devices to track patients with long-term conditions and give them some sense of control is a hot healthtech trend right now. When I spoke to Harry Leeming on a video call he told me he was exhausted, but then again he was in San Francisco publicising Visible in the lucrative American healthcare market. Luckily, his co-founder who does not have long Covid is doing most of the heavy lifting.

So what are the prospects of recovery for Harry and millions like him? He points me to research which isn’t encouraging.  “If you're sick at the three month mark, you've an 85% chance that you'll be sick at the one year mark. And of those 15% that say they recovered, a third of them are going to relapse.”

But as Harry says, “what gets measured gets managed'‘ - which will certainly ring true to anyone with Parkinson’s, another condition with a whole range of symptoms which are hard to quantify. So the hope must be that the Visible app can be a part of getting people with long Covid the help and understanding they need.