Welcome to the You + ME Registry mobile app!
The You + ME Registry is a collection of patient-reported data from people living with myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), people with long-term symptoms following a viral infection, and control volunteers. People living with these illnesses have invaluable information to share based on their lived experience. You + ME gives patients a platform to share what they know about their disease for research. The resulting large dataset can be used by researchers around the world to better understand disease causes and develop treatments.
After signing up for the Registry in a secure web portal, participants provide health information through a series of surveys. They also use the You + ME mobile app to record symptoms, activity, and other factors related to their disease over time.
You + ME mobile app users are asked to consistently report on a core set of symptoms: fatigue, brain fog, unrefreshing sleep, orthostatic intolerance (lightheadedness), and post-exertional malaise (PEM). Beyond the 5 core symptoms, people can self-select symptoms relevant to them for tracking in the app. There are additional screens for logging life events (e.g. socializing with family/friends), activity levels, and an overall rating of wellness. Graphing functionality within the app provides trends in easy to read, comprehensive charts that users can use to monitor their health and share with loved ones or healthcare team.
How to use:
- Sign up for the You + ME Registry, create a profile, and complete the Informed Consent: https://youandmeregistry.com
- Complete the baseline surveys in the secure web portal
- Download the mobile App
- Login using the You + ME username (email) and password you created when you signed up
- Get tracking!
Working together, we can answer the questions that are most important to people living with ME/CFS and other long-term illnesses.
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Screenshots
You FAQ
Is You free?
Yes, You is completely free and it doesn't have any in-app purchases or subscriptions.
Is You legit?
⚠️ The You app has poor ratings and negative feedback. Users seem unsatisfied with its performance or features.
Tracking data disappears (updated review - data is back)
As other reviewers have mentioned, the tracking data seems to disappear if you change any information on your profile. I updated my treatment list on the website and now all 9 days of previous tracking data are gone, all my symptoms, treatments, everything have disappeared with no way to add them back.
UPDATE: reported the issue to the company and their developers pushed an update that fixed the problem and brought all my data back.
Can’t sign up
There is no option to create a new account
How do I register an account??
I just downloaded this app excited to try it. However, it asks the user to log in and only accepts existing users. There is no option to create a new account….🤔 What next?
Sincerely,
Hoping for an app like this for years- JPT
Bug
Unfortunately I’ve come upon an insurmountable bug. I tried to add a new daily “life event” but when I did, the app deleted my entire list of usual events. Further, when I try to add them back (I can still see them on previous days), it doesn’t seem to recognize any of the standard ones, and adding any manually just deletes the previous one. Deleting and reinstalling the app was no help. Please tell me you can fix this!
ETA: now the symptoms have all been deleted as well, and I can’t add them back either.
Eats your tracking info
I’ve never reviewed an app, but given that this will mess with people’s health, gotta do so. Started tracking 3 days ago and logged in today to find it had deleted the 2 days I had charted. This is a lot of screen time (while intuitive, this is a very BRIGHT app, no dark mode) and work if you’re struggling. And the stress of seeing your info deleted might mess with someone! Stay far away.
Fantastic app!
For registration you need to go to the website, so easy peasy there.
Can’t even open it.
The first screen I get is to log in. There is nowhere to register an account. So how can I log in without and account? So frustrating.
How do you register?
Like another user I could only see the log in screen. There was no option to register, only log in as an existing user.
Can’t Register
HELP! Maybe it’s my brain fog but I can’t seem to find the place to register. When I look at the introduction it takes me to the login screen. There is no option to register. I’m sure I will change my rating once I get past this roadblock.
So glad this exists!
So grateful for the Solve ME CFS Initiative for building this app and doing the important work of collecting data for research into a cure. I use this every day to track my symptoms.