<aside> 📌 Our pitch deck can be found **here.**
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<aside> <img src="https://s3-us-west-2.amazonaws.com/secure.notion-static.com/cee36f20-92dd-481b-b2e5-77740ba42939/Group_6.png" alt="https://s3-us-west-2.amazonaws.com/secure.notion-static.com/cee36f20-92dd-481b-b2e5-77740ba42939/Group_6.png" width="40px" /> Harry’s story
Hi, I’m Harry, I was a fit and healthy 29-year-old, and now I have Long Covid.
I’m building Visible because this is what I wish had existed when I got sick 18 months ago. Here’s a little about me and how I got here.
In September 2020 I had a mild Covid infection. I thought that I had nothing to worry about and that I would recover in no time. I was young, fit, and healthy. I’d climbed mountains, cycled across countries, and exercised daily. I thought Covid would be a breeze.
And at first it was. Within a few days, I started to feel better. But over the following weeks my symptoms worsened. I had nausea, dizziness, fatigue, severe heart palpitations, and chest pain. I could barely think straight.
For those first few months I was in and out of medical appointments. Despite being bed-bound and often struggling to stand, my tests were coming back normal and I was repeatedly told my symptoms were caused by anxiety or deconditioning.
Eventually I started to believe the doctors, and I swore I would get out of bed and I would push myself every day until I was better. By day 5 my attempts to exercise had caused my symptoms to relapse so severely that I checked myself into hospital. It took me months to recover to my previous baseline and I still haven’t recovered.
Over the last 18 months, the disparity between how sick I was and how little recognition and support was available to me has been alarming.
But even more alarming is finding out that my experience is nothing new. We’ve known about post-viral conditions and ME for decades [1]. On a health quality of life score, these conditions rank as some of the most debilitating in the world [2]. Yet people with these conditions are widely dismissed and massively underserved.
I want to help change that.
Like many people with these conditions, I’ve learned the hard way that activity doesn’t always make you better. In fact, for these conditions, too much can make you significantly worse.
And so we’re left to figure out safe and sustainable levels of activity on our own, and with no tools to do so, chronically ill people have to turn to devices designed for fitness. Wearables and apps that are optimised for workouts and exercising, not rest and pacing.
That’s why I started Visible, an activity tracking platform for illness, not fitness.
I’m happy to have recovered enough to start building what I believe is badly needed and I’m looking forward to sharing the journey ahead.
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<aside> 📌 For simplicity, we use the term post-viral conditions in place of Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS). ME/CFS is a catch-all term for conditions that are typically triggered by viruses, but there are other triggers too.
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A 2020 study estimated that 20 million people worldwide were suffering from post-viral conditions. These conditions predominantly affect healthy working-age adults and can often be lifelong.
It is estimated 84 to 91 percent of people with post-viral conditions have not yet been diagnosed, meaning the true prevalence of the conditions is unknown.
You can read the CDC highlights on the condition here.
The table below from a 2015 study compares the health quality of life of people with post-viral conditions (ME/CFS) against other chronic illnesses. ME/CFS scores lower than cancers, stroke, diabetes, and more. It is an extraordinarily debilitating illness.
Health quality of life (EQ-5D-3L) scores measure mobility, self-care, usual activities, pain/discomfort, and anxiety/depression.
“I split my clinical time between the HIV and ME/CFS (post-viral conditions) patients, I can tell you that if I had to choose between the two illnesses, I would rather have HIV”
Nancy Klimas, Professor of Medicine and Immunology, University of Miami 2009
Despite the debilitating nature and prevalence of these conditions, post-viral conditions have been widely dismissed. It’s likely that this is because of:
We also have no doubt that the long history of gender bias in medicine has also played a role. Estimates of the prevalence of post-viral illness typically conclude that upto 4 out of 5 patients are female.
“Individuals are often stigmatized and told their illness isn’t real… people with ME/CFS [post-viral conditions] face an incredible burden just getting doctors to take their symptoms seriously”
Dr Barry Hurwitz, University of Miami: Co-Cure MED
