Why we’ve chosen to focus on ME/CFS and Long Covid

As a very early stage start-up focused on invisible illness, one of the first decisions we’ve had to make is which illnesses to focus on for our initial launch. As a small team (most of us live with invisible illnesses ourselves), we have to be realistic about the fact that we can’t build something that will support all types of illness right now. We’ve had to consider things like how many people we could help, how much we could help them, and what relevant experience we currently have on our team.

With that in mind, we’ve chosen to focus on Long Covid and ME/CFS. These two illnesses overlap closely; many of the pathological observations of Long Covid, including changes in immune, cardiovascular, metabolic, gastrointestinal, nervous, and autonomic systems, are similar to that observed in ME/CFS [1]. Those with ME/CFS and the majority of those with Long Covid [2] also share a major common symptom, Post-Exertional Symptom Exacerbation.

These similarities mean we can help a lot of people with a similar amount of work. Our founding team also has both ME/CFS and Long Covid, first-hand experience of the condition and feel we can bring some much-needed support to this area

When we looked at our sign-up forms, we found that 92% of people with ME/CFS or Long Covid wanted help managing their Pacing (interestingly it didn’t matter which of the two illnesses, the percentage was the same). So we’re very focused on helping to solve this problem.

But ME/CFS and Long Covid aren’t the only illnesses that can benefit from Pacing. Here’s a list of other illnesses that the team has compiled that also share Post-Exertional Symptom Exacerbation as a key feature:

Fibromyalgia
Dysautonomia including POTS
Post-Concussion Syndrome
Ehlers-Danlos syndrome
Post-Treatment Lyme Disease Syndrome

We know there is a lot of crossover between all of these conditions, but we don’t currently have the resources at Visible to know by how much. So while we’re focusing on ME/CFS and Long Covid for now, we hope that in the very near future we can expand to cover other conditions too.

If you'd like to make a suggestion for any other condition(s) that benefit from rest and pacing that we've missed, just send the team a message info@makevisible.com and we'll happily add them to our list!

The Visible Team