Visible symptom tracker app

Revel

Revel

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640
Wishful said:
Darn, all my symptoms are invisible.
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The app name, "Visible", is a little misleading since all of the symptoms actually being tracked are . . . not. 😄

The end goal for the Visible Team is to create a wearable activity tracker for pwME/LC to aid pacing vs. activity trackers like Fitbit that do not accommodate our needs.

I currently wear a Fitbit tracker to monitor my tachycardia and it's incredibly frustrating to be told by the Fitbit app that I have "crushed my exercise goal". In truth, my heart rate is out of control every time I stand upright but my tracker assumes I've been doing cardio workouts all week!
 
xebex

xebex

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Rufous McKinney said:
does it cost money?

I wonder when I will enter the 21st century....? (Luddite, here)

(I don't really download apps)

also, how can you phone measure heart rate variability?
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you put your finger over the camera light and the camera lens can read the blood flow through the finger, it detects BPM and apaprently HRV too though i can't imagine that being very accurate.
 
W

Wishful

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Alberta
Rufous McKinney said:
I wonder when I will enter the 21st century....? (Luddite, here)
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I stopped running in the technology race when I developed ME. I don't have the mental energy to feel enthusiastic about new computer games, and had no desire to try the social media sites. Now that I'm offgrid with a small solar power setup, I've gone with a low-power miniPC and a Raspberry Pi3 (my web browsing computer). I don't have a smartphone, so I can't run apps.

I use a handsaw and axe for much of my firewood needs. No stone tools though. :)

Wait, one bit of personal electronics: my Kobo e-book reader. It saves trips into town for paper books.
 
Gingergrrl

Gingergrrl

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Revel said:
The end goal for the Visible Team is to create a wearable activity tracker for pwME/LC to aid pacing vs. activity trackers like Fitbit that do not accommodate our needs.
Click to expand...

Could this App be used by people with other diagnoses (like POTS or other autoimmune diseases) or are they specifically tracking PwME and Long Covid? Could someone try the App without signing up for the data collection piece to keep their data private?
 
Rufous McKinney

Rufous McKinney

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Wishful said:
I use a handsaw and axe for much of my firewood needs
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Did 17 years of that. Somehow we'd scrounge up enough fuel to eek by (its not Canada), and alot of orchards around here trim, so if your observant, and quick- go GRAB that.

Gee all that wilderness fresh air, and Forest Breathing and molecules of perfect ions. Did not save me. (Yet I am still here, which is a form of saved, and therefore, I am now very grateful to just be here today!)
 
Revel

Revel

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There is an excellent podcast called "The Rest Room" hosted by Natasha Lipman (a chronic illness blogger).

In this episode (link below), "Can technology teach me to pace?", she interviews the founder of the Visible Team, Harry Leeming (who has LC).

He describes his journey with LC, how he came up with the idea of an "exertion tracker" and the challenges involved in developing the product when 50% of the team has ME, LC or EDS and so cannot always commit to a normal working schedule.

It was refreshing to listen to an interview between two people who live the experience of chronic illness and understand our limitations and needs.

https://podcasts.apple.com/gb/podcast/can-technology-teach-me-to-pace/id1218852479?i=1000580126171
 
Stretched

Stretched

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Revel said:
Visible symptom tracker app now available for download:

https://www.makevisible.com/blog/the-next-step
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Here is another option that is ready-to-use for the Apple IOS platform, i.e. iPad, iPhone et al.

https://apps.apple.com/us/app/manage-my-pain/id1444320523

It is customizable for a wide range of symptoms and illnesses, including CFS and it can print graphs and other reports. I would rate the rigor level at slightly above beginners, towards intermediate. It obviously takes a few efforts to set it up for personal objectives but no burdensome learning curve.

MMP can be used in a free mode but it also offers an option to buy ‘credits’ for a nominal fee to print the various reports when desired, e.g. maybe a few dollars here and there. It’s definitely NOT a
gotcha and seems sensitive to people’s real illnesses. The support is pretty good.
 
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wabi-sabi

wabi-sabi

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small town midwest
I am using visible and like it so far. It helps me a bit in pacing and seeing patterns that I otherwise wouldn't notice. It makes me aware of how long it takes to get over a crash and sometimes not push quite so hard.
 
Inca

Inca

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252
xebex said:
you put your finger over the camera light and the camera lens can read the blood flow through the finger, it detects BPM and apaprently HRV too though i can't imagine that being very accurate.
Click to expand...
I wonder if it could take my reading from my apple watch?
 
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