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

[Andy]

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

https://makevisible.co/




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

 

[Trish]

I assumed it was an app, but it looks like it's a wearable (like a fitbit) with linked app, that they are designing to have features of interest to pwME and pwLC.

They are asking on the website for people to vote for features they would like on the tracker.
https://makevisible.co/community-feature-requests

 

[Andy]

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.

 

[5vforest]

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:

Many invisible illnesses like ME/CFS, Long Covid and Chronic Lyme share one debilitating symptom: Post Exertional Malaise (PEM).

 

[MEMarge]

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.

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

 

[Andy]

I guess this is Harry.

 

[ME/CFS Science Blog]

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

 

[Trish]

It looks like a commercial venture to me. I still don't know whether they are pruducing an app that requires you to have a wearable and feed in its data, or they are actually designing a customised wearable.

 

[Wonko]

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.

 

[5vforest]

Looks like a potential origin story:



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

 

[kilfinnan]

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.

 

[SNT Gatchaman]

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.

 

[Ravn]

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/

 

[Sasha]

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.

 

[rvallee]

Today, we're launching the Visible Beta app for #LongCovid and #MECFS. We want to make tracking your condition and taking part in research available to as many people as possible, as soon as possible. Here's more about what we're building

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.

 

[Trish]

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.

I've had an email today since I joined their list of interested supporters a while back.
It's free to users, and they are expecting to make it available to research with participants being given the option of opting in to research using their anonymised data.

 

[It's M.E. Linda]

I've had an email today since I joined their list of interested supporters a while back.

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

 

[Trish]

Here's a direct link to the Visible website:
https://www.makevisible.com/
The app can be downloaded and is free.

They are also developing Visible Plus which is not free:

The Visible app is free to download and use. Visible Plus, which comes with a Polar™ Verity Sense to capture all-day data, will be available for a monthly subscription fee. Pricing will be announced soon.

 

[SallyC]

Here's a direct link to the Visible website:
https://www.makevisible.com/
The app can be downloaded and is free.

They are also developing Visible Plus which is not free:

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.

 

[Trish]

I have just signed up too. You need to do it on a smartphone as it uses the phone's camera to measure heart rate and heart rate variability.
I found it easy to use so far.