A conversation with Harry Leeming of Visible, an activity tracking platform for illness, not fitness. We explore Harry’s experiences with Long Covid and being disbelieved, all the really cool work that’s happening at Visible, the science behind it, and how we hope it will help people living with energy-limiting chronic illnesses.
We also discuss how Visible will contribute to research to push forward the science on these conditions, and break some of the stigma by literally helping you make your invisible illness visible.
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Natasha: Hello and welcome back to The Rest Room, the podcast about living well with chronic illness. I’m your host, Natasha Lipman.
If you’re a regular listener of The Rest Room, you’ll know that I harp on a lot about pacing.
As frustrating as it is, living with energy-limiting health conditions means that, whether I like it or not, my daily (and then cumulative) exertion (be that physical, cognitive, or emotional) plays a substantial role in my ability to function.
Of course, there are also SO many factors that are outside of our control beyond what we do on any given day. Case in point: my current blip has been directly impacted by a cumulation of several months of externally stressful things, and my bucket hath, as I like to say, overfloweth.
But, I have also continued to push myself when my capacity was lower, as if those external things weren’t happening at all. And the reality of my illnesses is that if I do too much, or push myself past my energy envelope, I will experience post-exertional symptom exacerbation, a crash, or a flare-up.
But, given that I have fluctuating conditions, what level of exertion is safely within my energy envelope? How do I know what activities my body can tolerate? And how do I wrangle my natural tendencies in which I’m somewhat prone to overdoing it to the point of collapse?
It’s a big reason why I’m super interested in better understanding the role exertion plays in the exacerbation of my symptoms, figuring out my warning signs that I need to slow down, and the role of tools and techniques, like pacing, to help me manage them.
So, when I heard that a new startup called Visible was building wearable technology to help people with energy-limiting conditions learn how to pace – using real-time data from our own bodies to help us understand how exertion is impacting our health – I got extremely excited.
Visible is an activity tracking platform for illness, not fitness. Think Fitbit, but the total opposite! Instead of telling you to move when you’ve been sitting still for too long, it will tell you when you’re overexerting and need to rest.
I was delighted to be invited to join the Visible team in April of this year as their Content Lead, and have had the opportunity to contribute to the development of the product.
I’ve spent a lot of time over the last few months thinking about how we conceptualise and communicate exertion for energy-limiting chronic illnesses, and learning how we can use technology to better understand our conditions – with the aim of reducing symptoms and (importantly) suffering.
As soon as I heard about Visible, I knew that it could be a game-changer for me (and hopefully so many others). I’m hoping that by getting more of an objective understanding (and some external validation) of what’s happening inside my body, I’ll be able to pace better, and in turn, not only predict, but reduce the number of crashes I’m experiencing.
Because of my job, I’ve been lucky enough to be one of the early testers of Visible, and the data I’ve seen so far about my own body is… well…let’s just say, not surprising but kind of depressing!
I’ve learned that over the last week or so I’ve been overexerting a lot more than I thought, and it’s helped me get a better understanding of my current, lower, capacity and how my body is responding to the different things I do throughout the day.
So, I’m really excited to finally be able to share Visible with you and welcome our co-founder, CEO (and my boss!) Harry Leeming as our guest for today’s episode of The Rest Room.
It’s a wide-ranging discussion where we explore Harry’s experiences with Long Covid and being disbelieved, all the really cool work that’s happening at Visible, the science behind it, and how we hope it will help people living with energy-limiting chronic illnesses.
We also discuss how Visible will contribute to research to push forward the science on these conditions, and break some of the stigma by literally helping you make your invisible illness, visible.
Harry’s path to setting up Visible began two years ago after a mild Covid infection…
Harry: I used to be very fit and healthy. I was exercising most days, ended up getting a mild Covid infection two years ago, and I guess maybe a quite standard story for most people with Long Covid, it was ` fairly benign couple of days and thought everything was going to be okay, I would recover as normal, and after a couple of days having returned to work, I had sort of a meltdown and severe heart palpitations, fluctuations in blood pressure and chest pain, fatigue. Since then still haven’t recovered.
Natasha: And what was that experience like of thinking that you were going to easily recover from Covid, as you said, you were young, you were fit, you were healthy and everything in the news really was that if you were young and healthy, you will have an easy recovery. What was that like after those first few days, when you had gone back to work and then started experiencing these symptoms, how did you feel and what did you do?
Harry: I think it was mean there was a lot of confusion as to what was happening. My symptoms became so severe that I actually went to A&E, things were that serious. And when I got there, they told me everything was fine. It was all in my head. So trying to figure out both my symptoms and why doctors weren’t listening to me all at the same time and things just weren’t getting better. Weeks went past, and I guess in some ways I was a little bit fortunate in that because I got Covid at the beginning of the second wave, I knew that there were some people who hadn’t recovered from the first wave. So I could start to join the dots of what this could look like, what recovery could look like. It’s a difficult journey to sort of transition from this assumption that you’ll get better tomorrow, to days and then weeks and then months and then it slowly dawns on you that this might be a while.
Natasha: Something that you mentioned that I think is very, very common for so many people with Long Covid and conditions like ME, is that they go to see a doctor, they go to the hospital and they’re really scared because they’re very unwell and they’re told that they’re completely fine. I know you’ve had some kind of really bad experiences with this with doctors. Can you share a little bit about that?
Harry: Yeah. I mean, the first time I went into A&E, they convinced me that it was anxiety and I remember leaving the hospital and believing them, I was walking out and then just as I was getting to the car, just being like this isn’t right. There’s something really fundamentally wrong with my body and just turning around and going back in again. And I got lectures from them being like, there’s nothing wrong with you and it’s likely anxiety.
And you sort of don’t know where to turn next. The very people that you go to or the society tells you when you’re ill, you go see a doctor and they’ll treat you. I mean, not only was I not getting treatment, I wasn’t even getting believed, which was mind blowing to me. And still is to this day, this sort of confusion on the doctor’s part between irrational anxiety and a legitimate concern for my health. It was frustrating that I was so quickly dismissed as being anxious, and I don’t think I expect medicine to have all the answers, but I definitely expect to be believed as a patient.
Natasha: And what did that do for you over the coming weeks and months when you hadn’t been believed, you weren’t getting care, you weren’t getting support and you weren’t getting treatment. Where did that leave you?
Harry: Yeah, so I think I really realised quite early on because of that experience, how much I was on my own and how much it was going to be on me to try and fix this, to figure out what’s going on. And so naively thought, I’ll figure this out myself. And of course turned onto the online forums to try and find answers and just researched and researched and researched. And that is where I started to learn about ME and these other invisible illnesses. And that sort transitioned into wanting to help change the narrative on these conditions.
Off the back of having multiple doctors not believe me that it was deconditioning or as anxiety, the two things I took up was CBT and trying to exercise. And I took my CBT very seriously, and in fact, I’ve got letters that I wrote to myself, convincing myself that this was all in my head and that there was really nothing wrong with me and I just needed to think right. And it’s painful two years later to look back on that and to think how sick I was at the time, and that was what I thought the solution was. It scares me to come across this world of invisible illness and to find out that actually Long Covid is nothing new. We’ve known about these conditions for forever. We’ve just done next to nothing about it.
Natasha: You mentioned that aside from CBT, exercise was something that you wanted to start looking into as a way of, I don’t know, quote unquote becoming healthy again, or fixing your health. How did you start thinking about exercise? I mean, I have a feeling I know how it went, but how did that go?
Harry: Yeah. I mean, when think enough doctors tell you it’s all in your head, you do start to believe them. And my solution was okay, I’ll just get out of bed and get on with this thing. And I’ll ignore all my symptoms.
I bought a fitness tracker and I set myself some goals every day. I’m going to do a little bit more. I mean, I essentially prescribed myself, graded exercise therapy and I lasted about five days. And on the fifth day had such a severe symptom relapse that again, the only decision I could make was to go to A&E, things were that bad. So I learned fairly quickly that exercise was not a good idea. And then since then, I’ve learned rather than trying to push myself actually resting and pacing was the answer.
Natasha: And how did you start learning about that and discovering these online communities and online spaces of these chronic illnesses that you didn’t know existed before you got ill?
Harry: Yeah, it’s a funny one. It’s like, where do you start looking for this information? Because it’s not on the traditional websites, there’s no doctors pointing you in that direction. And so I was trying to find researchers in these conditions on Twitter and it sort of all flowed from there really, and purely through the online community and doing my own research did I come across a lot of the work that the Workwell Foundation has done in the US into pacing and starting to use heart rate monitored pacing, and then slowly putting the pieces together in my mind of everything that I’d been doing wrong before and starting to correct my lifestyle so that my symptoms weren’t as severe. I weren’t getting these big relapses.
Natasha: Now, I suppose you mentioned the heart rate monitoring pacing. And so we can move into some of the juicy stuff. How did you start thinking about heart rate monitor pacing, and what was the reaction of your doctors when you started noticing trends?
Harry: I mean, like I said, I didn’t really initially start with thinking that I wanted to slow down. I initially started wanting to push myself and then I could see through my wearable data, that the days that I was doing more on, I was actually getting significant, significantly worse afterwards and slowly putting two and two together. And then it took me a long time to realise that, much too long. And so the wearables I was using were incredibly powerful in telling me about my condition, but they were essentially telling me to do the wrong thing. They were telling me to work out and exercise. And what I really need to do was rest and pace.
And I think the other area that I found the wearables really helpful was in getting diagnosis. So I could see that there was something very wrong with my body. And the doctors were telling me that I was fine, but I could see from my heart rate monitor that my body was not reacting normally to things I was doing, like standing up, lying down to sitting. And so when I showed them this data, they started to take my condition more seriously. So it was really interesting to me that essentially my condition, which all my tests were coming back normal and no one else could see actually through my wearable, I could actually see my condition.
Natasha: So where did the spark of the idea for Visible come from?
Harry: I mean, it started initially in that first month when I was lying in bed, I was very sick and I was trying to track my recovery and I was Googling online, I was like illness trackers, and I couldn’t find anything. And I was like, this is crazy. I’m so sick. And I can’t find anything to help me track my condition. And then having to turn to fitness trackers, and I’m on all these websites and they’ve got healthy people running around and I’m like, this isn’t designed for me. This isn’t what I really want, but having to, and having no other choice but to use them. And so it was initially having to buy a Fitbit and then a couple of months later, or a couple of weeks later ending up relapsing from it because it was telling me to do the wrong thing. And then it was this using my wearable to be able to see my illness, to be able to see my symptoms, my dysautonomia, and every step along the way, I couldn’t believe that all these devices exist for exercise working out and nothing existed for these conditions.
Natasha: So what were the first steps in thinking about setting up a company and also, I suppose, setting up a company while you are ill? I would say from personal experience, I don’t know if you can relate to this, I tend to find that getting a project or an idea that I can get my teeth into can be a really beneficial thing as a coping strategy also while you are poorly. But how was that process of starting to think about taking this idea, this thing that you needed, and turning it into a business while you were also really unwell?
Harry: So I was trying to get back to work and I was really struggling. I mean, I had such severe brain fog and on top of that, having come across this community and all this suffering, I sort didn’t care that much either about my job, and I kept doing more and more research on my condition. And at the same time, every step of the way thinking, why does this not exist? And I have, since being sick, I think like many people you really want to help move the research forwards as much as possible.
Short of being a biomedical researcher, one of the ways that I felt that could be, we could really help the research community move things forwards is if we had some kind of biomarkers. And what’s really exciting about wearable technology is that we can create these digital biomarkers. We can see orthostatic intolerance. We can see the amount time that you’re spending upright. And so it was really motivating for me to think that we could build a system that would help people not only manage their condition, but also measure it. And then we could use that with the researchers to try and help understand these conditions, what’s making people better, what’s making people worse.
Natasha: And when it comes to the business itself, what were those first steps that you took?
Harry: Yeah, so I actually ended up going out to Germany to go and do apheresis, and I happened to be staying in a flat with Dr. Asad Khan. And I’d been thinking about this project for up to a year until that point, but I hadn’t really taken the leap. And so when I met him, I start chatting to him about it, and he was like, “Oh, you should talk to this researcher, this researcher.” And all of a sudden within the space of a couple of days, we had put together this incredible medical advisory board. And they were all very excited about what we were proposing. And then with that, that sort of was the beginning of putting a website out there and seeing if people were interested in what we were proposing. And we had a couple of thousand people sign up within a couple of weeks, and that was really enough to then go out and start. I pretty much quit my job that week and started building a team, and we’ve now been working on Visible for almost eight months now.
Natasha: What was the idea that you specifically pitched to these researchers and that you were kind of pitching to places to get money for? What is a device that can help people for illness, not fitness? What does that look like?
Harry: So I think we’ve all been using, or a lot of people have been using fitness devices. So classically we think about these trackers as these wrist based devices that can track your steps and can encourage you to work out. And what we’re building with Visible is not a million miles from that, and we are changing the way that we talk about exertion from it being something that’s being encouraged to encouraging rest.
So one of the things that we did when we created the website is we created a waitlist and to get onto the waitlist, we actually asked a couple of questions and one of the questions were, what would you like to get out of Visible? And we had a list of options and interestingly 92% of people selected “help manage my pacing”. And then other options were, “see long term progress” and “see a measurable response to treatment”. And so we knew from the beginning that pacing was absolutely the thing that people really need help with. And that’s something that we are really focused on. And that’s why when we talk about Visible, it’s very much like this activity tracking platform, but it’s for illness, not fitness.
Natasha: And what specifically does that look like? Because I remember when Ed on the team first got in touch with me and told me about Visible. I was so excited about the concept because I’m so bad at pacing. I’m so bad at it. I make content about pacing. I talk about it all the time. I mean, I’m just getting a bit ahead of myself, but it’s been really interesting testing out very, very early version of Visible because the data that I’m seeing has depressed me so much because it’s helping me understand my own behaviors and how my body is reacting to those behaviors. I just remember right from the beginning, as soon as I heard about the concept of a wearable that can help me learn how to pace in a more objective way, because I think that’s what it can come down to. Oh, I can push a bit more. That’s fine. I got really, really excited. So I’d love to hear what a wearable, what an app can do to help people learn how to pace and the role that pacing can play and the different things that you can track to help you better understand that.
Harry: Yeah. So one of the reasons that pacing is so hard is that we have such a terrible feedback loop where what you do today has a massive impact on tomorrow. I mean, it can be a couple of hours later for post-exertional malaise. It can be a couple of days later. And so not having that immediate feedback makes it so hard for us to judge when we’re overdoing it. What’s really exciting about wearables is they can shorten that feedback loop massively so we can take all your signals. We can take your cumulative activity, exertion, your heart rate variability readings, which maybe we can talk about in a bit more detail, and we can essentially help you understand how likely are you to trigger a relapse. And if we can do that, then we can hopefully help people to live a more predictable life.
Natasha: You mentioned heart rate variability there. I’d love to get an understanding of what that is and the role it can play when we’re thinking about something like pacing.
Harry: Sure. So heart rate variability, shouldn’t be confused with heart rate. Your heart rate is, for example, 60 beats per minute. That’s a pretty standard resting heart rate for a lot of people. With heart rate variability, what we look at is the time between each beat. So if you have a 60 beat per minute heart rate, then you would assume that you would have a beat and then one second beat one second beat. What’s happening in reality is actually there’s 1.9 seconds, beat, 1.1 seconds, beat, 1.8 seconds, beat. And that’s this small variation in time, that actually is an incredibly important marker of your overall wellbeing of your health and the state state of your autonomic nervous system.
We have heart rate variability readings built into the app so we can measure your heart rate variability through a wearable, but we can also do it through a smartphone camera. It’s a cool feature. You can put your finger on your camera and over 60 seconds, the Visible app will be able to take a reading and we’ll be able to understand your heart rate variability.
The reason why heart rate variability is so important to track is that it’s been shown in multiple studies, that it actually correlates with your symptom severity. So if you have a lower heart rate variability, you’ll have worse symptoms. If you’ve got a higher heart rate variability, you’ll have better symptoms. So it’s a really good way of understanding. Are you getting better? Are you getting worse? And what’s making you better and what’s making you worse. And so you can see the result of if you’re pacing well or not. So it’s a really exciting metric that we’ve got built into our app. So you don’t even need a wearable to be able to take a measurement. We actually use some really cool technology. We’ve partnered with a company in California where we are able to take a heart rate variability reading by using a smartphone camera over 60 seconds. And if you can do that every morning, you can build up a really good picture of your illness. Now we also have a wearable available soon that will automate those readings so that you’re getting them every single day.
Natasha: And for people who are interested in the app itself, whether they use the wearable or not, when they download the app, when it is available, and as I said, I’ve been having a lot of fun playing around with some early versions of it, what will they be able to do with the app? What are some of the features that they’ll see? How will those features be able to help them start thinking about pacing?
Harry: I think it’s good to think of Visible in as two things. We’ve got a free app that we’re making available to anyone and using that app you can, as I mentioned, you take a heart rate, variability reading every day, you can see trends in your illness, and you’re also able to opt in to share your data with researchers around the world. Now that’s going to be available in the next couple of weeks, but alongside that over the next couple of months, we’ll be developing a wearable subscription, which integrates with our app. And you can use that to help you pace with real time notifications. And we also generate illness specific metrics. So rather than relying on steps, we’ve built in digital biomarkers like orthostatic intolerance and the amount of time spent upright, which are, there’s been a lot of work done out of the Bateman Horne Center in the US, into this metric and it correlates really nicely with illness severity.
We’re all dealing with so much uncertainty into our health and what’s going on. And that there is this other aspect of Visible that maybe we’re not talking about as much, which is that we can help you provide some answers. We can help provide some validation to your conditions. We can help you share your condition with your friends and family so that they can support you. I think there are some intangible benefits to what we’re building that is outside of the hard pacing feature and illness specific metrics. There is this bigger thing that we are building that is just making Visible, give you more confidence in your condition and hopefully a better quality of life.
Is that something you’ve thought about when working on Visible is while we’re building these features, and of course we are, we’re helping people pace, but there are less tangible things that we can do with it. And whether it’s the language we’re using or the photos we’re using, or even just the existence of Visible as a company in the first place. I mean, it gives so much legitimacy to these conditions. I think you look at diabetes and there are tons of apps and devices and companies that exist to help people manage their conditions. Why does this not exist for ME and Long Covid and other invisible illnesses?
Natasha: I was watching a YouTube video this morning, where a psychiatrist was talking about people who have intellectual responses to emotional things and how it might not necessarily be the healthiest thing in the world. And I realised that’s what I do with everything. So when I first heard about Visible, it very much was from a very practical perspective, something that I got very interested in very quickly, because my coping mechanism is to intellectualise everything and to look at things from a, what can I do about it perspective? And I think the vast majority of the time, that’s a very beneficial thing for me. I tend to try and not think about some of those other aspects, because I think if I do think about them too much, I get very upset and I don’t like feeling feelings.
It’s interesting, because I think you can take those very practical things like the pacing, but there’s something intangible to that in and of itself because you’re not having to rely on a subjective measure.
And so while I think initially my focus was very much on the practical and the ways that could benefit for me, I think even aside from some of the things that you were saying, there are intangible benefits to that as well. One of the topics that is not talked about enough is the level of self responsibility that has to come with living with these conditions. Everything is a calculation and everything that we do has to be weighed against all of the other things that we want to need to do. And so if I make a decision to do something that can have an impact, and so I think being able to outsource some of that in a way is incredibly valuable because not only are people who are not us able to see these things tangibly in front of them, on our phones so they could see, I mean, it’s been really interesting during this testing period, just seeing my heart rate go up to 140 and just being able to be like, oh, okay, that’s not great.
So there’s that, but then at the same time, there’s an element of, if my phone tells me that I’m overdoing it, I’m much more likely to stop if I don’t know, then some voice at the back of my head needs to make me stop. And so I think from that side of it, there are real intangible benefits to being able to outsource some of that responsibility and also be able to understand that the reason that we are feeling the way we are feeling is not actually a surprise, we can see it. And I think the emotional recognition of that is so substantial.
One of the interesting things I’ve found working with you guys over the last few months has been a lot of the conversations about who the app is for, how we discuss these issues around invisible illnesses like long Covid and ME, I’d love to discuss with you some of the challenges of trying to make something for a community that has suffered so much and trying to build something that is useful and inclusive when there are inherent limitations to being a startup and trying to create something like this.
Harry: Yeah, I know you and I, Natasha, have talked about this a lot where these conditions are so diverse that how do we make sure we’re building something that is useful to as many people as possible with the resources that we have as a startup. And it’s really frustrating, at least at the beginning, we have to be quite focused on who we build Visible for. And so we are specifically looking at myalgic encephalomyelitis and long Covid, but there’s really no reason why what we’re building can’t also apply it to other conditions out there, chronic Lyme, dysautonomia, but in the first instance, we have to stay really narrowed, make sure we’re building something really awesome and valuable for people with long Covid and ME, and then we will start expanding as much as possible. There’s this really difficult Venn diagram of overlapping conditions and trying to navigate that is really hard because we are going to alienate some people by not being able to build all the features we want in the first year. But I do hope over time that we can get there.
Natasha: And I think one of the other issues as well, is that along with being broad and diverse, across a number of different conditions, even within a diagnosis itself, the experiences of the individual can be so varied. I know people who have EDS who literally the opposite experiences of me, of where it impacts them. How did you take that into consideration and who Visible is made for, because if we’re thinking about, I don’t even know, I suppose severity is the word that is used, isn’t it? Like the severity of something like ME and Covid is so broad that you can have people who struggle, but can still work full time. And then you have people who cannot get out of bed in a darkened room, and they’re very, very severely affected. Where is Visible placed within that kind of spectrum?
Harry: Yeah, it’s a really good question. And I guess the sort of spectrum of illness severity that you mentioned is really wide. And so at the very mild end, do people need Visible? Maybe not. And at the very severe end where there’s such limited amounts of exertion that is being done, if you are bed bound, can we really provide value to people with severe ME? So in the mild moderate, I think in the first instance will be where we will be able to produce the most amount of value. That’s not to say we won’t at the other ends of the spectrum, but I think at least initially that’s where we’ll be hoping to make the most impact.
Natasha: What is the hope that people will be able to get out of using Visible?
Harry: To simply reduce the amount of crashes, reduce pem. Over the next six months, year, we hope that we will generate an incredibly powerful data set that will help us move from just reducing it to actually predicting it. And that’s where it gets really exciting for me is if we can predict post exertional malaise, and I think also building in these digital biomarkers so that people can see their condition, and it’s one of the reasons that we called Visible, Visible is we are trying to help people to see their illness. So seeing them through the biomarkers and actually not just make it visible to patients so that they can manage their own condition, but also make it visible to doctors so that they can recognise and treat it and making it visible as well to researchers as well. So they can understand it.
Natasha: I think I’ve probably mentioned this to you a few times. I was telling a friend about Visible and she started crying because she said, sometimes she’s in situations where she’s asked, “Oh, can you just stay and work five minutes longer?” And she knows if she’s there for five minutes longer, she will crash. And just the idea of being able to have something where she can pick it up and be like, “No, look, I literally can’t.” And just, that’s been really interesting for me while I’ve been testing out getting notifications. They’ve been telling me that I’m overexerting myself, which is happening much more often than would be ideal, let’s just put it that way. But can you talk a little bit about the way you were integrating scientific research into this project?
Harry: Sure. So, I mean, think it’s really important. We haven’t mentioned it yet, Natasha, but half of the team at Visible have either long Covid, ME, or EDS. And so we are all really driven to try and move research forwards as much as possible and it’s really, what’s driving us and get side of bed in the morning is being able to do that. We know we’ve got this really comprehensive data set that people will be tracking for themselves to help them manage their condition. So if we already have this data set, why not make it really easy for people to be able to share that with certain researchers?
So we’ve built a section in the app where you can go in and you can very easily opt in to share your data with researchers. And so what does that look like? I think one of our first studies that we have coming up is with Imperial College London, and we’re looking at the impact of the menstrual cycle on symptoms for Long Covid and ME. So if someone is tracking that in the app, they are able to share that. And then the researcher, Viki Male at Imperial, will be able to look at your data and be able to see what impact the timing of your menstrual cycle has on your symptoms as well as the impact of contraceptives.
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Natasha: So one of the things that is really interesting about Visible is that so many of us do live with chronic illnesses ourselves. How is that from a business perspective for you? Because I think as somebody who is a freelancer with chronic illness, I know there’s a lot of challenges that come with that. But as a founder, a) from your own perspective, that must be really challenging trying to run a business with chronic illness, but then how do you also try and make sure that the company is inclusive for your employees who have chronic illness and won’t necessarily be able to show up and do things on any given day?
Harry: Yeah, it’s a funny one. Isn’t that? Because you and I both have to deal with this and trying to hit deadlines with these conditions is really difficult and there’s some irony in the fact that we’re building a company to help people pace. And we’re trying to build this thing as fast as possible and how do we do that and take into account our own conditions.
And we’ve got a fantastic other half of the company that are very healthy and a very, I guess it’s built into the culture that all our work is done asynchronously. So we have one team meeting every two weeks where we all try and get together. But even then if people can’t make it, they can always just send a quick update or send a quick video message.
I think one of the exciting things about this world over the last couple years is the digital tools that we’ve got available to be able to work together. I mean we chat on Slack and we use this amazing video messaging tool called Loom to send messages back and forth. And really that just gives everyone the flexibility to be able to work when they can. And I mean, it’s working so far, Natasha, what do you think?
Natasha: Yeah, I was really impressed when I saw Loom for the first time and you were able to talk me through something while sharing your screen, but I picked it up several hours later. So that was really nice and we didn’t have to jump on at any given time. I think I get a triggered by the Slack noise so I have it turned off, but just from past experiences on slack where people just wouldn’t leave me alone in old jobs, I think at first I was not Slack, but I became a bit stricter on myself and feeling even if I’m not planning on working that day, I don’t want to feel like I’m missing out on something. And so making sure that I do actively close Slack and there’s no pressure to open Slack and have it open all the time. But I think it’s still that mentality of when I worked at the BBC, for example, I would have my emails open all day with the noise up. Even if I wasn’t able to work, I felt like I had to respond to those messages. So I think it’s also a psychological shift for me being able to just say, I can’t do something right now and it’s not a big deal.
Harry: And I think, I guess one of the slightly different things about Visible is because as a founder I have one of these conditions, that that is of baked into how we work already and I can’t be available 24-7. I have to take mornings, afternoon, I have to take days off randomly. So we have to have all these processes in place to be able to deal with that. And then we then have set standard for everyone else as well that we don’t have these expectations that would usually occur at other companies. And I think all of us are trying to build a company that we wish existed, which is that super flexible, do the work when you can do the work and the fact that we are maybe not able to be as productive as some of our healthier work colleagues, I think we more than make up for, with our knowledge of these conditions and the motivation we have and what we’re building. So it’s a really exciting group that we’ve got together.
Natasha: One of the things that I think a lot of people are very righteously concerned about when it comes to apps and data is privacy and security. How are you building that into the app and how are you deciding which researchers to collaborate with?
Harry: So I think with all these kind of apps, it’s so important that people have control of their data. One of the things that we’ve done is we’ve split up giving consent to Visible so that we can use your data versus consent for passing your data onto researchers. So once you join the app, you give us the Visible team permission to use the data, to improve the algorithm and what we’re building. And then separately, you have to opt in via the research section to share your data with the researchers and the process for bringing researchers on board, so we have our medical advisory board that we run this research by and we also have the Visible team of which half us have lived experience of these conditions. Really we go through a process where we share it with both groups and if we both agree that this would be a good project to help move our understanding or invisible illnesses forwards, then we include it in the app.
Natasha: And it isn’t just the Visible team. It isn’t just the medical advisory board. One of the things that we’re doing is we’re working with a core group of patients to help guide the development of the app. It’s been very patient centred since the beginning. Can you talk a little bit about the founding 100 and how you’re working with people living with these conditions to build Visible?
Harry: So I guess because half the team have lived experience, we know how important that is in building these things. I think all of us have had far too many bad experiences of having to use services that are designed by researchers or people without these conditions. And so we really wanted to make sure to get it right from the beginning that we get as many people involved as possible in helping build and develop Visible. So what we did is we emailed the first 100 people on the waitlist and we asked them, “Hey, are you interested in helping us build Visible?” And so we form this group called the Founding 100. This group essentially helps us to report bugs, they’re helping us with the branding, they’re helping us with testing the app. It’s been really good fun, and it’s frustrating cause we would love to have as many people involved in it as possible. We just don’t have the resources to be able to support a bigger Facebook group. But yeah, that’s been a really good way to make sure that we are building for these really diverse set of conditions.
Natasha: And it’s been really interesting as well just looking at how different functionalities on the app can help people with brain fog. I don’t know if we can talk about it, but for example, the evening check-in, the changes that have been made to that going from having to input things all on different screens every time and clicking next to having everything be on one screen or just even the way that things are designed can help or hinder people who are living with brain fog, who are fatigued anyway and might not necessarily be likely to pick up an app. It’s interesting, I should have said this at the beginning. I’m not a tracker. I don’t like tracking. And so how can you use the tech that you’ve got and make it as accessible and inclusive as possible so that people living with these conditions are more likely to be able to feel that they can use it comfortably?
Harry: Yeah. It’s been such an interesting process because I think most of the devices in this space or the fitness trackers we’ve been using have all been designed for people that are like hyper optimising their health and they’re really interested in the sort of Nth degree and moving things forwards like 0.1%. But actually for us, with our conditions and our brain fog, we just want something really basic to use that gives us the information that we need to be able to take the right actions. And so we’ve been working really hard to try and make that as easy as possible to do. And yeah, so one of the things that you mentioned was initially when we built Visible in our very first version, we showed people some questions about their symptoms and we showed these people these questions one at a time. But what we quickly found out was that that becomes a very long process is if you’ve got quite a few symptoms.
So it’s things like shortening that flow so that you can do it in less than 60 seconds every day. Because none of us want to think about our condition more than we have to. And so we’ve been trying to keep that in mind. And so you only have to go into the app maximum twice a day to be able to get the most amount of benefit from it.
We’re taking a step back and really looking at these conditions from first principles, we shouldn’t be using Fitbits to manage these conditions. We actually don’t use a device that is based on the wrist. We use a device that sits on the arm. And the reason that we do that is that it’s really important that we capture postural changes. Cause we know that autonomic nervous system dysfunction is underlying a lot of these conditions. And so if we have a way of measuring that challenge to your autonomic nervous system, that movement from sitting down or lying down to standing up and we measure your body’s response, we have an incredible ability to measure the severity of some of your symptoms.
Natasha: And it isn’t just the device that you use and where you put it on the arm, as you said, it’s kind of like a redesign in thinking about what we measure and how and why we measure it. So I think one of the things that you get with a lot of these fitness apps is you haven’t moved in 30 minutes, get up and go for a walk. Whereas with the notifications that I’ve been getting are Natasha, you’ve been exerting, you’ve been overexerting yourself. It isn’t yeah, slow down or you maybe need to be a bit more cautious about your energy expenditure today. And so how did you go about thinking about how you communicate those things? And this is something that we’re still discussing that is coming up about how do we talk about rest and how do we talk about pacing within a context of our phones? How do we do that?
So, I mean, this could be a whole podcast in and of itself and I’ve been thinking about it a lot in the last few days actually, but that process of redesigning the language around an activity tracking app, what was that like? And how do you think that is beneficial for people living with these conditions?
Harry: Yeah, I mean, it’s a really interesting going, we’re building it right now. I mean, Natasha you’re using the test version and when do we send these notifications? I mean, we don’t want to be anxiety inducing. We don’t want to be too aggressive with the notifications. They need to be more reminders. We want to be using softer language, and I think maybe one really good example of where we’re using language to of reframe how we think about our activity is that we actually don’t use the word activity anywhere in the app. We use the word exertion because doing lots of activity is always seen as a good thing. Everyone always wants to do more activities, but exertion is associated with overexertion doing too much. And so it sort of reframes it in your mind that actually we do want to avoid that overexertion scenario.
Natasha: You talked about exertion and I think that’s actually something that would be really interesting to define because we’re asking people about different types of exertion and the impact that that can then have on their symptoms. And I think sometimes that can be quite a delicate topic to bring up.
Harry: And again, the language thing, we talk about physical exertion, we talk about cognitive exertion, and we really talk about emotional exertion rather than focusing too much on stress. We think about these three types of exertion and with Visible in the first iteration of our heart rate monitor pacing, we are very focused on the physical side of it, but we do have the ability in the app to ask you about your cognitive and your emotional exertion. And I think one of the areas that we’re quite excited about moving into is again, using heart rate variability to start measuring these other exertions because while heart rate itself is a good marker of your physical exertion, heart rate variability can give us some insight into cognitive and emotional stress. And so shifting our pacing algorithm to not just look at heart rate, but heart rate variability is where we hope to take things over the next couple of months with Visible.
Natasha: I think it’s really beneficial to have some of those live notifications and we’ve had conversations and we’ll still be having conversations about frequency and how we phrase them and what is the most beneficial and giving people different options with that and what I’m also then interested in, and I think this comes back down to my very practical nature, is how can we provide information for people to figure out then what to do with that data? One frequent guest on The Rest Room is my occupational therapist, Jo Southhall, who I’m actually seeing on Wednesday because I had a bit of a breakdown about overdoing things in my life in general. And I was like, this isn’t good. So I’m going to learn how not to do that. Still haven’t learned how to do that.
But I think having someone like her look at that data, she would then be able to say, these are some of the patterns that are picking up. These are some of the things that you’re doing in the day that you might not have thought are causing you to spike. One of the things that I noticed is that while we’ve been testing is that actually cognitive exertion spikes me more than physical exertion oftentimes. And so I might be sitting in bed or on the sofa, but I’m exerting myself cognitively. And so what lessons can I learn from that? Can I figure out what some of my safer boundaries are so that I don’t push into my exertion stage as frequently? And so I think on top of just instant feedback, I’m really interested in how we can start thinking about offering some of that advice to people. Is that something that’s fair to say?
Harry: Yeah, no, totally. And I think we’ve discussed this as a team. What is the first couple of weeks or months look like when using Visible? Do we have a sort of training wheels mode where people can enter in their activity so they can get a better idea of what’s impacting them and maybe that’s not something that are expected of them to do for a long period of time, but at least to get you up and running pretty quickly and getting some actionable feedback for you to be able to reduce pem. I mean, one of the big ones for me, and I think everyone goes through this lesson is when you start using a heart rate monitor, how much your heart rate spikes in the shower, it’s insane. So it’s these kind of things that we can give insights to. But so once you’ve learned those initial ones, you can kind of know to avoid them. But yeah, I think something like that would make complete sense.
Natasha: So you mentioned that Visible will have a pacing algorithm. What would that look like and how will that be developing over time?
Harry: Our pacing algorithm is very basic right now and we’re working with the Workwell Foundation with their science, and that is to have very basic heart rate limit alerts. So we will notify you as soon as you go over a certain threshold, but over the next couple of months, using that algorithm to help people pace, we’ll also be collecting a bunch of data. And then we’ll be able to look at the algorithm and essentially do an iteration on it and be like, okay, what was someone doing in the 24 hours proceeding a crash? What were they doing 48 hours before? And we can start to build up a picture of how much cumulative exertion equates to post exertional malaise. And then we can set notifications to trigger before you get to that tipping point. And what’s really awesome about that is that we can make it individualised to each person so we can tailor it towards you because everyone will be different and they’ll have different levels of dysautonomia, different illness severities, different susceptibility to pem. And we can take all that into account.
What we don’t want to do is show people a hundred metrics and be like, oh, figure this out for yourself. We want to be able to narrow that down to hopefully the end goal is just a one number that essentially says, if you carry on at this level of activity, you are this likely to trigger pem and probably the process that we’ll go through over the next couple of months is narrowing down the metrics that have the most impact on you, and then transitioning that into a new algorithm, which can then do the interpretation on top of that. So rather than us requiring for you to look at the data and be like, okay, what does this mean? We can just tell you what it means.
Natasha: Why hasn’t this been done before?
Harry: I know, I mean, I guess this sort of comes back to why have we not researched ME? And these illnesses are invisible, right? We can’t see them. And I think the people that have them are too sick and the people that don’t think this is a real problem that needs to be solved. So no one’s done anything about it. And I think we have this situation now with Long Covid where there’s just so many people that have this condition that we can’t ignore it anymore. And if we’re not going to ignore people with Long Covid, then we can’t ignore those people with ME, chronic Lyme and all these other conditions. But no, I’m totally with you. The numbers are crazy. I mean, if you look at the impact on everyone, on the quality of life, look at the prevalence, this is affecting a lot of people.
I mean, I think there’s also some biases around how people view chronic illness. And I think typically people think that’s been people who have been negligent on their health, or maybe they’re a bit older and they’ve probably missed the fact that a lot of people with these conditions actually get it when they’re young and healthy and really will do anything and are super motivated to get back where they are and to use products like this.
Once you start talking about it and I’ve been very open about my condition, I’ve been very fortunate to be very open about it as well, because my work no longer requires me to be quiet about the fact that I’ve got brain fog.
And so I’ve been talking to more and more people about it and the amount of stories and the amount of times that I hear from someone oh my sister has ME or my aunt, you start to extrapolate those anecdotes across the world population. And the numbers that we look at and we think, ah, is that right? Those are really large numbers. They start to make sense when you think that you probably know one or two people or one person with ME, one person with long Covid. When it comes to long Covid, it’s a global disease. So there’s no reason why it wouldn’t be the same, the numbers that we see in the UK, aren’t the same in the US, in South America, everywhere.
Natasha: One of the things that has come up a few times during this conversation and there’s something that’s come up a lot in our conversations has been the role of community and the role of the pre Covid chronic illness community, and then how they have supported people with long Covid over the last few years. What has your experience been of the online communities and what role do you think they’ll be playing over the next few years and how do you want to play your role? What do you see as your role, as our role within Visible within those existing communities that have done so much with very little recognition?
Harry: No, I totally agree. I mean, it’s been a lifesaver for me. All the knowledge that I have on my condition has come through Twitter, Facebook, Reddit, has come from these online communities. There’s been so much amazing, patient driven resources in these online communities and I think what we’re learning with long Covid is just how powerful patient voices are and I think there is going to be this massive shift and we can kind of see it happening already, where we start listening to patients more and more, and that starts to drive research. And I hope Visible is part of that. We hope that we can build some of the research behind these conditions. A lot of the research that goes into pem I hope we drive a lot of that and I hope we also drive this sort of change in stigma. I think if you look at what’s happened in mental health in the last five years where we’re now very open about talking about our mental health and you see the shift that’s sort occurred, there’s no reason why the stigma can’t shift as well with invisible illnesses.
And I hope that Visible can really lead the charge on that by bringing recognition to these conditions because really that’s, recognition is we’re still missing that first step, because in my mind, first we need the recognition, then we get the funding, then we get the research, then we get the treatment. And so anything that can help us move that research forwards and it was one of the reasons that we called Visible, Visible was trying to bring more visibility to these conditions. I think it’s so important. And I think that just the lack of a biomarker in these conditions has been so detrimental to being able to shift the narrative away from this being a psychological illness.
Natasha: So what you might not know if you’re listening to this is that both of us have been recording this with kind of foggy brain. So I’m going to do us both a favour and wrap this up and also just say that we’re very grateful to my amazing producer Philly who is making us sound excellent, I’m sure. But as I said, I was so excited about the concept of Visible and I’m really grateful that I get to be part of the team that helps to build this in some way. And I’m just from a purely selfish level, I’m really excited for the developments that are to come. What are you the most excited for when it comes to Visible? What can people be looking out for and how can they try it out? How can they get involved?
Harry: There’s so much to be excited about. We’ve got a really awesome team working on this full time, some of the best software developers, some of the best data scientists who are looking at this data. And I really think that we are looking at probably the most comprehensive data set from people with these conditions. And so that’s really exciting and really to dive in and see how much can we reduce pem and even if we can predict it. So that’s what I’m really excited about over the next couple of months. And if everyone’s interested in finding out more about Visible, you can go to our website, makevisible.com and you can sign up to our waitlist and we’ll be sending out updates shortly. I mean in terms of timing, we hope that we have a free app available in the next couple of weeks and in the next couple of months to slowly be going out to our waitlist to be able to use our wearable subscription.
Natasha: And one of the things that I’d love if you would come back as a guest is to go over some of my data where we’ve kind of got more of a build a few months down and just really explore Visible in action and just see what we can learn from that data, and then think about what are the takeaways of how I live my life, which is probably not ideal.
Harry: Oh for sure. That’d be really cool. And I think I should probably say to your listeners that we have been quite quiet about what we’ve been doing at Visible for the last eight months and our intention going forward is to be as public as possible about everything that we’re doing, all the decisions we’re making, all the features we’re building. And so I’m just really excited to share it. I think having one of these conditions, it’s so frustrating that all the research feels like it’s done behind closed doors. You don’t really know what’s going on or what progress is being made until the pre-print comes out. But with us, we’re not actually part of academia, so we don’t have to wait for all these things. We don’t have to wait for grants. We don’t have to wait for ethics approvals. We don’t have to wait for papers to be approved. We can just share it directly on our blog. So we are be running an ongoing campaign, calling it Building In Public where we’re sharing everything that we do as much as possible. So definitely if you’re interested in following our journey, we’ll be posting on our blog hopefully once a week.
Natasha: A huge thank you to Harry for joining us and sharing the exciting work we’re doing at Visible. If you want to learn more and be notified when we launch – head to makevisible.com where you can sign up to the waitlist.
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Aaand that’s all from me. Thanks so much for joining me in The Rest Room. I’m off to check my Visible score! Ta ta for now!
Links
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Learn more about Visible and sign up to the waitlist. You can also follow Harry on Twitter.
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Subscribe to The Rest Room newsletter for weekly “slow content” about chronic illness. If you want to support more work like this, you can become a premium member for £5 a month or £50 a year.
- Produced by Philly Guillou at OG Podcasts.
- Episode art by Lucy Dove.
- Introductory music by Amit Rai.