Harry Leeming was in good shape! He was young, he exercised daily, had climbed mountains, and even cycled across continents. An engineer in the electric car field, he was making a difference as well.
Then, in September 2020, Harry came down with COVID-19. No big deal, he thought. He was, after all, the picture of health. This was going to be a breeze! It was at first, but then as the weeks went on, the symptoms began to pile up. Soon, athletic Harry struggled to stand and eventually became mostly bedbound.
Then he made his fateful decision. On his doctor’s advice, he started to push himself. Five days later, he checked himself into the hospital and has never been the same since.
Harry Leeming intimately knows the costs of not pacing.
“We’re making invisible illness, visible.”
Enter Visible. Visible – Harry’s brainchild – potentially presents a revolutionary development in wearables for long COVID, ME/CFS, and similar diseases – one that could impact not just the health of the people that use it but the long COVID and ME/CFS fields as well. The company has long-COVID roots, extensive experience with app development in the startup world, and, in a nice twist, has focused on getting funding from investors who have skin in the game; i.e., they are personally acquainted with these illnesses.
ME/CFS and related diseases have long been considered an “invisible illness” because most people look fine and standard tests are usually normal. It’s not normal, though, to have your heart rate boom or heart rate variability drop when a person sits or stands. That’s where Visible comes in: it produces hard data that helps you pace better and ultimately feel better. Here’s an opportunity to kiss goodbye (as much as possible) the push/crash cycle.
The app will allow people to regularly measure their body’s biometric signals using their smartphone camera. This data is overlayed with symptoms, exertion, and other factors (medication, menstrual cycle) to help users understand their long-term progress and spot patterns in their illness. Users can also opt-in to share their data anonymously with researchers including Imperial College London.
In the new year, they will launch Visible Plus, a monthly subscription that includes a bundled wearable device, that will provide real-time pacing guidance and illness-specific metrics.
I was glad to be able to chat with Harry about Visible.
What were you doing before you became ill?
I used to be an engineer, I started out in Formula 1 and then spent time in the US developing electric vehicles.
Your bio says you’ve climbed mountains and cycled across continents! You were in good shape! Can you say more about that?
I’ve always loved the outdoors, and time off work usually involved getting into the mountains as fast as possible. I climbed Mt Blanc a few years ago, and I’ve cycled across various countries and mountain ranges including Iceland and the Pamir Mountains in central Asia. I can safely say nothing has been harder than 2 years of Long Covid.
Tracking devices and apps are all over the place – I use two of them myself. Why create another one?
Harry: I’ve had long COVID for over 2 years now. I’ve been frustrated that while billions of dollars have been put into wearable devices to help healthy people manage their fitness, none really work with serious complex chronic health conditions like long COVID and ME/CFS to manage their activity.
I’ve had to use fitness trackers that encourage workouts and exercise, instead of rest and pacing. They’re not optimized for reducing PEM. That’s frustrating given how helpful good wearable sensors could be for conditions like long COVID and ME/CFS.
For example, like many people with complex health conditions, I have dysautonomia, and while all my blood tests come back normal, I can see through my wearable data that my body is not responding correctly to simple stressors that are not accounted for in the current health tracking devices like being upright – whether sitting or standing.
Other chronic illnesses like diabetes have advanced technology to help people manage their condition; it should be no different with ME and long COVID. Just as people with diabetes control their glucose levels via metabolic tracking, people with ME and Long COVID need to be able to control their exertion levels. We’re building the tools to help do that via ANS tracking.
In the short term, wearable technology can help us understand how we can better manage these stressors and improve our pacing. In the longer term, this data can be used to create digital biomarkers for energy-limiting illnesses that can be used in research and clinical trials. Biological data points are what researchers and pharmaceutical companies crave. Plus, a good wearable can provide data on functionality – something crucial for disability claims.
Being able to help people like me and move the science forward at the same time is what motivated me to build Visible. Easily accessible wearables have the potential to do this on a massive scale.
How did Visible come about?
In November 2021, I spent some time in Mulhiem, Germany trying apheresis where I had the opportunity to assist leading researchers in investigating the impact of microclotting in long COVID and ME.
Through that experience, I was introduced to Dr. David Putrino, Professor Resia Pretorius, Dr. Asad Khan, and many other researchers. Their agreement that a platform like Visible was badly needed gave me the impetus to take on Visible full-time.
Since then, Visible has been collaborating with researchers around the world. Our team has not only lived experience of these conditions (EDS, ME, and long COVID) but is also at the top of their game in engineering and data science.
So exactly how is Visible different?
It’s helpful to think of Visible as two things: it helps measure your condition and it helps manage your condition.
Visible measures long COVID and ME by using biomarkers that are specifically designed for these conditions. For example, the two we’re working on right now include UpTime and Orthostatic Intolerance (i.e., automating the NASA lean test).
All the other tracking platforms and metrics are designed for healthy people and are using metrics such as steps to encourage activity and exercise, not rest and pacing. We’re trying to take the guesswork out of pacing so that you can optimize your health and your activity and avoid the push-crash cycle that we are so familiar with.
Visible helps to manage long COVID and ME by starting with a heart rate monitored pacing guidance strategy developed by Todd Davenport – a physical therapist and published author associated with the Workwell Foundation (and one of our medical advisors).
Our wearable and app are set up to send real-time pacing notifications based on current and cumulative heart rate. Over time, we will extend this to other sensor data and will apply machine learning to provide the most accurate pacing guidance.
Another novel feature of Visible is the collection of postural data. The upper arm location of the Polar device gives us incredible insight into the body position. Since we know that dysautonomia underpins many complex chronic conditions, it’s crucial we capture challenges to your autonomic nervous system that come with upright activity, understand how your body responds to those challenges, and provide data-driven guidance.
We also have research studies that users can easily (and explicitly) opt-in to within the app to share their data directly with researchers. Our first in-app study is with Imperial College, and we’ll be announcing more details in the coming weeks.
Visible to all: A commitment to building out Visible publicly. You stated that you’re committed to building Visible out in public. Can you explain why you want to do that and what you mean by that?
We’ve decided to be radically transparent with Visible. We’re going to be putting out about a blog a week as we build out Visible to explain why we’re doing what we’re doing.
With our small team – most of whom have an invisible health condition – we have to make some tough decisions about the functionality we can impart to the app, the conditions we can support right now, and the timelines for developing them.
For instance, while we recognize people with other conditions such as fibromyalgia, dysautonomia – including POTS, post-Concussion Syndrome, Ehlers-Danlos Syndrome, and Post-Treatment Lyme Disease Syndrome experience post-exertional malaise, we’ve chosen, for the time being, to focus our efforts on long COVID and ME/CFS. Because Visible is intended to go beyond being an activity-tracking app and actually help contribute to long COVID and ME/CFS research, I hope that researchers will be excited by what we’re doing and how we’re doing it and decide to collaborate with us.
“We know we’re building for people with illnesses, particularly ME, who have had to endure gaslighting and graded exercise therapy for decades.” Visible
The app is now available in ‘Open Beta’, which means it’s available for anyone to download test, and use, as they continue to develop the Visible platform. You can download the app here and read about the beta launch here.
The free app lets you measure your heart rate variability using your smartphone camera, see trends in your illness, and share your data with researchers.
You can also sign up to be on the waitlist for Visible Plus. Visible Plus is a subscription that includes a Polar armband with access to real-time pacing guidance and illness-specific metrics and will also be available soon. Sign up to be on the Visible Plus waitlist.
More on Visible
- Founder podcast (1hr): Harry/Visible journey.
- Medical advisor podcast (30mins): Some insight from our medical advisor Dr. David Strain into using HRV to measure these conditions from 11 minutes onward.
- Blog post (2 min): Harry’s personal story.
- Presentation at the Long Covid Physio Conference (5 mins).
Coming up – digging deeper into Visible’s unique methodology