Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

"Visible tracks your post-viral illness so you can manage your activity, avoid relapse and improve your health."

https://makevisible.co/

https://twitter.com/user/status/1463922230614802435



There's not a lot of detail on the website - it seems to be focused on heart rate monitoring and tracking of symptoms.

 

I wonder how many non-medically trained patients they have involved in the development, in order to properly represent their target audience.

I also wonder if they have reached out to the You+ME registry team, to see if collaboration is possible rather than duplicating effort.

 

Seems interesting.

Homepage makes it seem like those three doctors are developing it, but there's a "About us" page that clarifies that it is founded by "Harry and Luke". (no surnames)

Wonder who they are?

Also, it's interesting that they choose to mention these three:

 

Someone has tweeted them about the Solve You+ME registry.

 

I guess this is Harry.

https://twitter.com/user/status/1463916565351608327

 

Is this part of a research project or just a commercial thing?

 

The non information on the site suggests its product research to find out what people would want.

Some of the requests would make such a device prohibively expensive for the market they are targeting.

It looks like they are suggesting a complete system, wearable and app, with medical reporting, from, based on the initial questions, a flawed model.

I.e. a commercial attempt to sell something people say they want regardless of if it's useful.

 

Looks like a potential origin story:

https://twitter.com/user/status/1432424574663237634


there’s probably no point in commenting on the product itself, since all that actually exists is a single webpage

 

If you search

Visible tracks your post-viral illness

2nd top is North Bristol NHS Trust


https://www.nbt.nhs.uk/our-services...service/post-viral-fatigue-a-guide-management

Google does work in mysterious ways.

 

Can technology teach me to pace?
A conversation with Harry Leeming of Visible

60 minutes, with the first 15 mins offering a very good encapsulation of the new LC patient experience of complete failure of current healthcare. All will be familiar to this audience.

 

A few blog posts are appearing on the website now so maybe they're getting close to launching?
They are making all the right noises so far, so that's promising, although the website marketing-to-information ratio could be improved. So could the website design. It has annoying moving bits on it that many of us find hard to deal with.
https://www.makevisible.com/

 

Do they have a contact form? Might be worth telling them.

 

https://twitter.com/user/status/1594745800579489794


Not sold on using one of those platforms unless they're connected to research. SolveME had an app in beta for years now, still not available outside the US.

 

Me too. I found it buried in amongst the ‘Social’ emails, so “Thank You” @Trish !

 

I've signed up to the app today, initially it looks promising, a fairly gentle tracking system and HRV measurement. I really hope it is as useful as it seems. I doubt I'll be able to afford to sign up to the wearable though.