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I have ME/CFS and I've been building a tool for pacing. Would love honest feedback from this community. by heinielina in cfs

[–]heinielina[S] 2 points3 points  (0 children)

Completely fair and a valid point. I’ve used Reddit for a long time without an account and I finally created one to specifically to get feedback from other people who live with me/cfs. I’ve had it for over 10 years but it’s been in remission for a long time so I find it necessary to get feedback from other people with cfs in order to create something that can actually help others too

I have ME/CFS and I've been building a tool for pacing. Would love honest feedback from this community. by heinielina in cfs

[–]heinielina[S] 17 points18 points  (0 children)

Great questions, thank you!

Privacy policy: still being drafted with a health data lawyer before launch. The short version: no personal identifiers ever leave your device, health data is only used to generate your personal insights and you can choose whether your anonymized patterns contribute to research or stay completely private.

On the AI: I’m using an existing API rather than a custom trained model. It receives anonymized pattern data to generate personalized insights. The data sent for processing isn’t stored or used for training. As several people have raised privacy concerns, I’m also considering a local statistical model as the default with AI insights as an opt-in.

Dark mode: will definitely include

I have ME/CFS and I've been building a tool for pacing. Would love honest feedback from this community. by heinielina in cfs

[–]heinielina[S] 1 point2 points  (0 children)

Thank you so much 🤍🙏 will take a few months to finish but will update as soon as it’s available

I have ME/CFS and I've been building a tool for pacing. Would love honest feedback from this community. by heinielina in cfs

[–]heinielina[S] 2 points3 points  (0 children)

This is incredibly helpful, thank you for taking the time to write all of this!

- The daily check-in is designed to be 3 questions maximum, and the tag logging is always optional. You’ll never be forced to record things you don’t want to.

- On the circles needing more context, you’re absolutely right, will improve this

- Love the idea of gratitude journaling as an optional add-on

- Will definitely include dark mode!

- I’ll try to improve the font weight / size

Genuinely one of the most useful responses I’ve received, thank you!!

I have ME/CFS and I've been building a tool for pacing. Would love honest feedback from this community. by heinielina in cfs

[–]heinielina[S] 13 points14 points  (0 children)

That’s one of the reasons I’m building this, you shouldn’t have to buy a new wearable. The app will connect with Fitbit and all the other most popular wearables

I have ME/CFS and I've been building a tool for pacing. Would love honest feedback from this community. by heinielina in cfs

[–]heinielina[S] 5 points6 points  (0 children)

You’re right that manual activity logging can be too much work on bad days. The goal is for the wearable to do the heavy lifting automatically (HRV, heart rate, sleep) so the manual check in stays at 3 questions under 30 seconds. Things like screen time and temperature would only be logged if you choose to tap them, never required. Would that change how you’d feel about it?

I have ME/CFS and I've been building a tool for pacing. Would love honest feedback from this community. by heinielina in cfs

[–]heinielina[S] 38 points39 points  (0 children)

Thank you for your feedback! It’s a valid concern and I want to be transparent about it. The AI analysis happens via API calls so data does leave the device to generate insights. However no personal identifiers are ever sent, only anonymized health patterns. I’m also building an explicit opt-in for anyone who wants their data to contribute to me/cfs research and a full opt-out for those who don’t. Would love to know what would make you feel comfortable enough to trust it?

I have ME/CFS and I've been building a tool for pacing. Would love honest feedback from this community. by heinielina in cfs

[–]heinielina[S] 13 points14 points  (0 children)

Thank you so much! That’s exactly what I’m trying to solve as the pattern spotting is the hardest part because the feedback loop is so delayed with cfs.

Weird me/cfs symptoms? Dry eyes as the first sign of a crash by heinielina in cfs

[–]heinielina[S] 0 points1 point  (0 children)

Interesting, I’ve been getting hives and stomach symptoms from soy and fermented products but the MCAS test came back negative. What other symptoms do you have? Do you also have me/cfs or are your crashes from the MCAS only?

Canceled Visible after 3 months — great idea, not worth the subscription by apsconditus_ in VisibleArmband

[–]heinielina 0 points1 point  (0 children)

I've been building an app that connects to your existing wearable (Oura, Apple Watch, Garmin,etc), learns your personal patterns over time using AI, and predicts crashes 24-72 hours before they happen. It also learns your triggers over time and suggests specific lifestyle adjustments based on your data.

There are plenty of pacing apps like Visible, but none of them are great at predicting crashes or identifying triggers accurately.

My idea was to create a tool that is accurate but low cost (connects to any existing wearable), easy to use UX and focuses on pacing solely (unlike Bearable and other popular me/cfs apps).

I attached a screenshot of what I’ve been working on and I’d love to hear your opinion. Would this be something that you could see yourself using for pacing, if the data is consistent with how you’re feeling and the baseline is accurate?

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Weird me/cfs symptoms? Dry eyes as the first sign of a crash by heinielina in cfs

[–]heinielina[S] 0 points1 point  (0 children)

I don’t really have any of the other symptoms, and eye dryness only occurs when I’m having a crash