Preprint Article Version 1 Preserved in Portico This version is not peer-reviewed

You + ME Registry: A Research Platform to Facilitate Clinical and Therapeutic Discoveries in ME/CFS and Related Diseases

Version 1 : Received: 24 November 2021 / Approved: 25 November 2021 / Online: 25 November 2021 (13:51:54 CET)

How to cite: Ramiller, A.; Mudie, K.; Seibert, E.; Whittaker, S. You + ME Registry: A Research Platform to Facilitate Clinical and Therapeutic Discoveries in ME/CFS and Related Diseases. Preprints 2021, 2021110478 (doi: 10.20944/preprints202111.0478.v1). Ramiller, A.; Mudie, K.; Seibert, E.; Whittaker, S. You + ME Registry: A Research Platform to Facilitate Clinical and Therapeutic Discoveries in ME/CFS and Related Diseases. Preprints 2021, 2021110478 (doi: 10.20944/preprints202111.0478.v1).

Abstract

ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) is a chronic, complex, heterogeneous disease that affects millions and lacks both diagnostics and treatments. Big data, or the collection of vast quantities of data that can be mined for information, has transformed the understanding of many complex illnesses like cancer (1,2) and multiple sclerosis (3,4), by dissecting heterogeneity, identifying subtypes, and enabling the development of personalized treatments. It is possible that big data can reveal the same for ME/CFS. Solve M.E. developed and launched the You + ME Registry to collect longitudinal health data from people with ME/CFS, people with Long COVID (LC) and control volunteers using rigorous protocols designed to harmonize with other groups collecting data from similar groups of people. The Registry is an invaluable resource because it integrates with a symptom tracking app, as well as a biorepository, to provide a robust and rich dataset that is available to qualified researchers. Accordingly, it facilitates collaboration that may ultimately uncover causes and help accelerate the development of therapies.

Keywords

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Long COVID; data acquisition source; post-infectious; longitudinal cohort study; patient-powered

Subject

MEDICINE & PHARMACOLOGY, General Medical Research

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