Personalized Management of Fatigue in Individuals With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID Using a Smart Digital mHealth Solution: Protocol for a Participatory Design Approach.
Enrique Dorronzoro-Zubiete, Jes��s Castro-Marrero, Jorge Ropero, Jos�� Luis Sevillano-Ramos, Mar��a Dolores Hern��ndez, Ramon Sanmartin Senta��es, Jose Alegre-Martin, Patricia Launois-Obreg��n, Isabel Martin-Garrido, Asuncion Luque Budia, Juan R Lacalle-Remigio, Luis B��jar Prado, Octavio Rivera Romero
Author Information
Enrique Dorronzoro-Zubiete: Electronic Technology Department, Universidad de Sevilla, Sevilla, Spain. ORCID
Jes��s Castro-Marrero: Research Unit in ME/CFS and Long COVID, Division of Rheumatology, Vall d'Hebron Research Institute, Universitat Aut��noma de Barcelona, Barcelona, Spain. ORCID
Jorge Ropero: Electronic Technology Department, Universidad de Sevilla, Sevilla, Spain. ORCID
Jos�� Luis Sevillano-Ramos: Architecture and Technology Department, Universidad de Sevilla, Sevilla, Spain. ORCID
Mar��a Dolores Hern��ndez: Electronic Technology Department, Universidad de Sevilla, Sevilla, Spain. ORCID
Ramon Sanmartin Senta��es: Research Unit in ME/CFS and Long COVID, Division of Rheumatology, Vall d'Hebron Research Institute, Universitat Aut��noma de Barcelona, Barcelona, Spain. ORCID
Jose Alegre-Martin: Research Unit in ME/CFS and Long COVID, Division of Rheumatology, Vall d'Hebron Research Institute, Universitat Aut��noma de Barcelona, Barcelona, Spain. ORCID
Patricia Launois-Obreg��n: Physical Medicine and Rehabilitation Department, Vall d'Hebron University Hospital, Barcelona, Spain. ORCID
Isabel Martin-Garrido: Unidad de Enfermedades Autoinmunes y Minoritarias, Servicio de Medicina Interna, Virgen del Rocio University Hospital, Sevilla, Spain. ORCID
Asuncion Luque Budia: Salud Mental, Unidad de Gesti��n Cl��nica, Virgen del Rocio University Hospital, Sevilla, Spain. ORCID
Juan R Lacalle-Remigio: Preventive Medicine and Public Health Department, Universidad de Sevilla, Sevilla, Spain. ORCID
Luis B��jar Prado: Preventive Medicine and Public Health Department, Universidad de Sevilla, Sevilla, Spain. ORCID
Octavio Rivera Romero: Electronic Technology Department, Universidad de Sevilla, Sevilla, Spain. ORCID
BACKGROUND: Fatigue is the most common symptom in myalgic encephalomyelitis/chronic Fatigue syndrome (ME/CFS) and long COVID, impacting patients' quality of life; however, there is currently a lack of evidence-based context-aware tools for Fatigue self-management in these populations. OBJECTIVE: This study aimed to (1) address Fatigue in ME/CFS and long COVID through the development of digital mobile health solutions for self-management, (2) predict perceived Fatigue severity using real-time data, and (3) assess the feasibility and potential benefits of personalized digital mobile health solutions. METHODS: The MyFatigue project adopts a patient-centered approach within the participatory health informatics domain. patient representatives will be actively involved in decision-making processes. This study combines inductive and deductive research approaches, using qualitative studies to generate new knowledge and quantitative methods to test hypotheses regarding the relationship between factors like physical activity, sleep behaviors, and perceived Fatigue in ME/CFS and long COVID. Co-design methods will be used to develop a personalized digital solution for Fatigue self-management based on the generated knowledge. Finally, a pilot study will evaluate the feasibility, acceptance, and potential benefits of the digital health solution. RESULTS: The MyFatigue project opened to enrollment in November 2023. Initial results are expected to be published by the end of 2024. CONCLUSIONS: This study protocol holds the potential to expand understanding, create personalized self-management approaches, engage stakeholders, and ultimately improve the well-being of individuals with ME/CFS and long COVID. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/50157.
