MyFatigue

MyFatigue Team

MyFatigue Collaborators

Dr. Heins de Vries

Dra. Kerstin Denecke

Dra. Elia Gabarrón

Dra. Minna Isomursu

Dr. Guido Giunti

Dra. Vasiliki Mylonopoulus

Dr. Shabbir Syed

Abstract

Fatigue is recognised as one of the most common presenting complaints in individuals with post-viral conditions such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID. The extent of fatigue feature on patients life is huge, affecting to their physical, cognitive, and socio-economic conditions. It impacts strongly on patients wellbeing, leads in many cases to social isolation and mental health problems, and reduces their quality of life. Fatigue in ME/CFS and long COVID is poorly understood, and little is known about their similarities and differences. There is a need for new research aimed to discover them and to translate them into actionable recommendations to manage fatigue in long COVID. Effective fatigue management of ME/CFS and long COVID prevents the accumulation of disabilities because of the worsening of patients health conditions and minimizes the consequences of disease. However, poor adherence rates to the management recommendations and strategies are commonly presented among individuals with ME/CFS and with long COVID because of the unpredictability and variability of the course of both conditions. In such circumstance, personalization is a key element to adapt recommendations to the individuals perceived fatigue. To be effective, personalization must consider contextual and behavioural factors to adapt individuals condition. Digital health enables remote collection of real-time data in real-life scenarios that may be used as basis for this personalization. Artificial Intelligence models developed using those collected data may help in the understanding on what extent contextual and behavioural factors are impacting on fatigue severity in ME/CFS and long COVID. This worthy knowledge may be used to create new therapies and personalized self-management strategies using context-aware digital health solutions. Despite the efficacy of the use of digital health in the personalized self-management of chronic diseases, little is known about the potential benefits of personalised and context-aware digital health solutions for fatigue self-management in ME/CFS and long COVID. The MyFatigue project proposes a multidisciplinary and interdisciplinary research, following a patient-centred and participatory approach, aimed at understanding fatigue in ME/CFS and Long COVID and to find opportunities for designing digital health solutions supporting in its self-management to improve individuals quality of life. A personalized and context-aware digital health solution for fatigue self-management in ME/CFS and long COVID will be developed and its feasibility, acceptance, and potential benefits will be assess through a pilot study. The research team of MyFatigue consists of researchers from 2 hospitals (Hospital Universitario Virgen del Rocío and Hospital Universitari Vall dHebron) and the Universidad of Sevilla. MyFatigue has also the support of 4 patients associations and 6 technological companies.

Results

Journal Papers

• Enrique Dorronzoro, Jesús Castro, Jorge Ropero, José Luis Sevillano, María Dolores Hernández, Ramón Sanmartín, José Alegre, Patricia Lauonis, Isabel Martín, Asunción Luque, Juan Ramón Lacalle, Luis Béjar, Octavio Rivera-Romero (2024). Personalized just-in-time management of fatigue in individuals with ME/CFS and long COVID using a smart context-aware digital mHealth solution: Protocol for a participatory design approach. JMIR Research Protocols. doi:10.2196/50157
• Rivera-Romero O, Gabarrón E, Ropero J, Denecke K. Designing Personalized mHealth solutions: An overview. Journal of Biomedical Informatics 2023; doi:10.1016/j.jbi.2023.104500