This article was first published in ME Essential Spring 2024
Written by George Evans, Associate Trustee, ME Association
Visible is a free mobile phone app designed for those suffering with ME/CFS or Long Covid. The app helps the user with pacing through calculating a daily stability score which gives an indication of the pacing required for that day.
Upon waking each morning the app asks the user to record, on a scale of 1 to 5, how well they slept that night. The app then records Heart Rate Variability (HRV) simply by placing and holding a finger over the smart phone camera lens.
Information is also recorded before bedtime, when the user is asked questions about their symptoms that day. This includes the ability to track information about crashes experienced, menstrual cycle and a free text box for additional notes.
This may sound complicated, however the user interface and clever technology built into this app makes recording this information quick and simple. From the HRV biometric data and data entered each morning and evening, the clever algorithm returns a stability score (1 to 5) for the day. This score is a guide to how much pacing is needed during that day.
Visible have recently teamed up with Imperial College London to undertake research projects, one of which is looking at the relationship between menstrual cycle and Long Covid. Users of the app can enroll onto these research studies and give consent for their logged data and biometrics to be used in these research studies.
With over 40,000 users, Visible is hoping that not only can the app help individuals to manage symptoms, but to also help with research to improve the prognosis for all sufferers. The app also features a Communities tab which provides links to the Visible blog, informative information and podcasts.
Visible has really helped my own personal journey into learning how to pace. I was a busy and active person before ME and I find resting very challenging. The hardest part, for me, is giving myself permission to rest without guilt and I have found Visible a great tool.
Visible gives me the scientific evidence I need to decide to slowdown and pace my day. Having tangible information on my phone also helps me to explain to others why I’m taking a slow day.
The tracking ability is basic with the stability score being based on the user’s answers (which may vary day to day) and a single HRV rating once per day. However, for a free app the technology is impressive.
With my successful experience of using the free version of the app, I have since joined Visible plus (which has a monthly subscription fee) that uses wearable technology to track my HRV throughout the day giving me daily pace points to further help manage my energy.
I will share my experience in the next edition of ME Essential.
George Evans
Associate Trustee
The ME Association
