Progress in the treatment and understanding of invisible illness* is frustrating. Research can be slow and the results are only published after months (or years) of work.
At Visible we want to do things differently.
We want to be radically transparent in everything we do.
We’re going to build Visible in public. This means that we’re committing to updating our blog once a week to show you what’s going on behind the scenes in our virtual office space.
We’ll be sharing the how, the what, and the why behind the things we’re building, and put them on our website for everyone to see (this means the triumphs along with the challenges!).
Why We Think Building in Public is Important
We want to be clear that we are led by science.
We know we’re building for people with illnesses, particularly ME, who have had to endure gaslighting and graded exercise therapy for decades. It’s important that we’re consistently clear about where we stand, champion an evidence-based approach where possible and provide a fair, balanced view where the evidence is lacking.
Not everything we do will help everyone with an invisible illness. We want to be open about why that is.
The Visible team deeply understands the problem we are trying to solve (in fact, many of us are living with an invisible illness), but we are equally humble to what we don’t know, and aware that not everything we do will help everyone. As a very early stage start-up focused on invisible illness, we’re limited by the amount of money we can spend, what features we can build and how quickly we can work (especially considering that most of us are sick). This means we’re going to have to make some tough decisions, particularly as these illnesses are so diverse, about what functionality we can and can’t support and timelines for delivering them. It’s only fair to the community that we make our thinking behind decisions clear.
We want to increase our collective understanding of invisible illness
While first and foremost we’re building an activity tracking platform for illness, what’s really driving the Visible team is the need to increase our collective understanding of invisible illness. We hope by being open about our work we can contribute to the community’s knowledge and also attract researchers to collaborate with us.
We want to provide optimism for the future
Having an invisible illness can make it hard to see the light at the best of times. We hope that by building in public we can share some much-needed progress and some hope for the future.
Over the next three weeks, among other things, our blog posts will attempt to answer:
- Why are we choosing to focus on ME and Long Covid?
- Who’s on the Visible team so far?
- What technology are we using to research Post-Exertional Symptom Exacerbation?
- Which experts are we working with?
The Visible Team
*What do we mean by invisible illness?
At Visible we support conditions that benefit from rest and pacing and lack an accepted diagnostic test. There is no widely recognized term for all of the overlapping conditions that fit within this criteria, so we are referring to them as “invisible illness”, though we’re aware that there are other conditions that are invisible, like mental health conditions.