Protocol Personalized Management of Fatigue in Individuals With [ME/CFS] and [LC] Using a Smart Digital mHealth Solution:... 2024 Dorronzoro-Zubiete et al

Full title: 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

Abstract
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.

Open access, https://www.researchprotocols.org/2024/1/e50157

 

What is it that makes people still hold on to this idea that there is some magical way to 'manage' this that will be effective but hasn't been found yet? It's like there is this cultural block against advising rest when really it's the only thing that may help. Well, OK, it's a financial block but whatever I guess it amounts to the same.

This is their premise:

Promises that have never materialized. Some dude says so is not evidence, even if it's many dudes, even if those dudes are professors of medicine. Or people who sell such apps and/or programs. Neither is hope that maybe this could be it even though it has basically no chance to.

For sure there are many way worse projects out there, but the potential benefits here are so trivial as to make it largely pointless. Self-managing is just a fancy way of having people suck it up while, maybe, they naturally recover. But it's not normally possible because the energy demand of daily life are far above what the illness allows and no app can change that. And then there's finances. And so many obstacles that no digital well-being app will ever change.