Since the Internet’s earliest days, patients have used online resources to share experiences, learn about diseases and treatments, and become advocates. In recent years we have seen these online communities evolve into centers of patient-driven research. Modern day, patient-driven research has the potential to be used as meaningful evidence as larger sets of data are gathered.
Datafication = the process of using technology
to turn many aspects of our lives into data.
With few researchers and clinicians specializing in myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), many patients have become experts in ME/CFS specific research by doing their own online study of published literature. In addition, you make important observations about your own condition by living with it every day.
- UP band helps you understand how you sleep, move and eat
- Mio band, continuously tracks heart rate
- iFit Active band tracks everyday activity, sleep and nutrition
- … just to name a few
Though they are largely marketed as fitness or workout devices, they can be used to readily track things like sleep, activity, what you eat, heart rate and more. They typically come with an app for your Smartphones, which can be used to track and monitor many things using other apps or passively using the GPS. This translates to a lot of data; in some cases 24 hours, 7 days a week. This allows you to be the researcher, tracking and monitoring the things that are meaningful to you.
Now there are emerging ways for you to incorporate this data with important biological data. We are working on ways to collate all of this information; integrate it with your biological data (e.g., your gut microbiome), share it (if you want to) with others like you, and analyze it so that patterns can emerge.
Currently, there is no other experimental platform that allows for this type of discovery with and by the patients. But at the Solve ME/CFS Initiative we understand that you are critical to effective research. We must actively engage YOU – the patient – in our research efforts if we are to cure ME/CFS sooner rather than later.
Read the other blogs in this series on Breaking Down the Complexities of ME/CFS: