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

Discussion in 'Monitoring and pacing' started by Andy, Nov 25, 2021.

  1. Andy

    Andy Committee Member

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    Hampshire, UK
  2. Trish

    Trish Moderator Staff Member

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    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
     
    Ash, adambeyoncelowe, Ravn and 4 others like this.
  3. Andy

    Andy Committee Member

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    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.
     
  4. 5vforest

    5vforest Senior Member (Voting Rights)

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    Location:
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    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:

     
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  5. MEMarge

    MEMarge Senior Member (Voting Rights)

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

    Andy Committee Member

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  7. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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

    Trish Moderator Staff Member

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    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.
     
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  9. Wonko

    Wonko Senior Member (Voting Rights)

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    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.
     
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  10. 5vforest

    5vforest Senior Member (Voting Rights)

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    adambeyoncelowe, Ariel, Ravn and 3 others like this.
  11. kilfinnan

    kilfinnan Established Member (Voting Rights)

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  12. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    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.
     
  13. Ravn

    Ravn Senior Member (Voting Rights)

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    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/
     
  14. Sasha

    Sasha Senior Member (Voting Rights)

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    3,694
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    Do they have a contact form? Might be worth telling them.
     
    Louie41, bobbler, Ravn and 2 others like this.
  15. rvallee

    rvallee Senior Member (Voting Rights)

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    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.
     
  16. Trish

    Trish Moderator Staff Member

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    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.
     
  17. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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

    Trish Moderator Staff Member

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    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:
     
  19. SallyC

    SallyC Senior Member (Voting Rights)

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    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.
     
  20. Trish

    Trish Moderator Staff Member

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    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.
     

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