JMIR Publications

ABSTRACT

Background:

Fatigue is the most common symptom in ME/CFS and long COVID impacting the 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 mHealth solutions for self-management, (2) predicting perceived fatigue severity using real-time data, and (3) assessing the feasibility and potential benefits of personalized digital mHealth solutions

Methods:

The MyFatigue project adopts a patient-centred 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, utilizing qualitative studies to generate new knowledge and quantitative methods to test hypotheses regarding the relationship between factors like physical activity, sleep behaviours, and perceived fatigue in ME/CFS and long COVID. Co-design methods will be employed 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:

Fatigue study opened to enrolment 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.