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

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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.

International Registered Report Identifier (IRRID)

PRR1-10.2196/50157

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Most cited references 13

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Evolving phenotypes of non-hospitalized patients that indicate long COVID

Hossein Estiri, Zachary H. Strasser, Gabriel Brat … (2021)

Background For some SARS-CoV-2 survivors, recovery from the acute phase of the infection has been grueling with lingering effects. Many of the symptoms characterized as the post-acute sequelae of COVID-19 (PASC) could have multiple causes or are similarly seen in non-COVID patients. Accurate identification of PASC phenotypes will be important to guide future research and help the healthcare system focus its efforts and resources on adequately controlled age- and gender-specific sequelae of a COVID-19 infection. Methods In this retrospective electronic health record (EHR) cohort study, we applied a computational framework for knowledge discovery from clinical data, MLHO, to identify phenotypes that positively associate with a past positive reverse transcription-polymerase chain reaction (RT-PCR) test for COVID-19. We evaluated the post-test phenotypes in two temporal windows at 3–6 and 6–9 months after the test and by age and gender. Data from longitudinal diagnosis records stored in EHRs from Mass General Brigham in the Boston Metropolitan Area was used for the analyses. Statistical analyses were performed on data from March 2020 to June 2021. Study participants included over 96 thousand patients who had tested positive or negative for COVID-19 and were not hospitalized. Results We identified 33 phenotypes among different age/gender cohorts or time windows that were positively associated with past SARS-CoV-2 infection. All identified phenotypes were newly recorded in patients’ medical records 2 months or longer after a COVID-19 RT-PCR test in non-hospitalized patients regardless of the test result. Among these phenotypes, a new diagnosis record for anosmia and dysgeusia (OR 2.60, 95% CI [1.94–3.46]), alopecia (OR 3.09, 95% CI [2.53–3.76]), chest pain (OR 1.27, 95% CI [1.09–1.48]), chronic fatigue syndrome (OR 2.60, 95% CI [1.22–2.10]), shortness of breath (OR 1.41, 95% CI [1.22–1.64]), pneumonia (OR 1.66, 95% CI [1.28–2.16]), and type 2 diabetes mellitus (OR 1.41, 95% CI [1.22–1.64]) is one of the most significant indicators of a past COVID-19 infection. Additionally, more new phenotypes were found with increased confidence among the cohorts who were younger than 65. Conclusions The findings of this study confirm many of the post-COVID-19 symptoms and suggest that a variety of new diagnoses, including new diabetes mellitus and neurological disorder diagnoses, are more common among those with a history of COVID-19 than those without the infection. Additionally, more than 63% of PASC phenotypes were observed in patients under 65 years of age, pointing out the importance of vaccination to minimize the risk of debilitating post-acute sequelae of COVID-19 among younger adults. Supplementary Information The online version contains supplementary material available at 10.1186/s12916-021-02115-0.

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Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology

Fernando Estévez-López, Kathleen Mudie, Xia Wang-Steverding … (2020)

This review aimed at determining the prevalence and incidence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Europe. We conducted a primary search in Scopus, PubMed and Web of Science for publications between 1994 and 15 June 2019 (PROSPERO: CRD42017078688). Additionally, we performed a backward-(reference lists) and forward-(citations) search of the works included in this review. Grey literature was addressed by contacting all members of the European Network on ME/CFS (EUROMENE). Independent reviewers searched, screened and selected studies, extracted data and evaluated the methodological and reporting quality. For prevalence, two studies in adults and one study in adolescents were included. Prevalence ranged from 0.1% to 2.2%. Two studies also included incidence estimates. In conclusion, studies on the prevalence and incidence of ME/CFS in Europe were scarce. Our findings point to the pressing need for well-designed and statistically powered epidemiological studies. To overcome the shortcomings of the current state-of-the-art, EUROMENE recommends that future research is better conducted in the community, reviewing the clinical history of potential cases, obtaining additional objective information (when needed) and using adequate ME/CFS case definitions; namely, the Centers for Disease Control & Prevention−1994, Canadian Consensus Criteria, or Institute of Medicine criteria.

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Subjective but Not Actigraphy-Defined Sleep Predicts Next-Day Fatigue in Chronic Fatigue Syndrome: A Prospective Daily Diary Study.

Charlotte Watson Russell, Alison Wearden, Gillian Fairclough … (2016)

This study aimed to (1) examine the relationship between subjective and actigraphy-defined sleep, and next-day fatigue in chronic fatigue syndrome (CFS); and (2) investigate the potential mediating role of negative mood on this relationship. We also sought to examine the effect of presleep arousal on perceptions of sleep.

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Author and article information

Contributors

Octavio Rivera Romero:

ORCID: https://orcid.org/0000-0001-7212-9805

Electronic Technology DepartmentUniversidad de Sevillaavda. Reina Mercedes s/n,ETSII InformáticaSevilla, 41012Spain34 954554325orivera@us.es

Journal

Journal ID (nlm-ta): JMIR Res Protoc

Journal ID (iso-abbrev): JMIR Res Protoc

Journal ID (publisher-id): ResProt

Title: JMIR Research Protocols

Publisher: JMIR Publications (Toronto, Canada )

ISSN (Electronic): 1929-0748

Publication date Collection: 2024

Publication date (Electronic): 12 April 2024

Volume: 13

Electronic Location Identifier: e50157

Affiliations

[1 ] Electronic Technology Department Universidad de Sevilla Sevilla Spain

[2 ] Research Unit in ME/CFS and Long COVID Division of Rheumatology Vall d'Hebron Research Institute, Universitat Autònoma de Barcelona Barcelona Spain

[3 ] Architecture and Technology Department Universidad de Sevilla Sevilla Spain

[4 ] Division of Rheumatology Vall d'Hebron University Hospital Universitat Autònoma de Barcelona Barcelona Spain

[5 ] Physical Medicine and Rehabilitation Department Vall d'Hebron University Hospital Barcelona Spain

[6 ] Department of Medicine Universitat Autònoma de Barcelona Barcelona Spain

[7 ] Unidad de Enfermedades Autoinmunes y Minoritarias, Servicio de Medicina Interna Virgen del Rocio University Hospital Sevilla Spain

[8 ] Salud Mental, Unidad de Gestión Clínica Virgen del Rocio University Hospital Sevilla Spain

[9 ] Preventive Medicine and Public Health Department Universidad de Sevilla Sevilla Spain

Author notes

Corresponding Author: Octavio Rivera Romero orivera@ 123456us.es

Author information

Enrique Dorronzoro-Zubiete https://orcid.org/0000-0001-8478-9851

Jesús Castro-Marrero https://orcid.org/0000-0002-2481-3052

Jorge Ropero https://orcid.org/0000-0001-5445-0646

José Luis Sevillano-Ramos https://orcid.org/0000-0002-1392-1832

María Dolores Hernández https://orcid.org/0000-0003-2597-1156

Ramon Sanmartin Sentañes https://orcid.org/0000-0002-6415-6368

Jose Alegre-Martin https://orcid.org/0000-0002-7582-7585

Patricia Launois-Obregón https://orcid.org/0000-0001-8115-2564

Isabel Martin-Garrido https://orcid.org/0000-0001-5199-4373

Asuncion Luque Budia https://orcid.org/0000-0002-1182-1299

Juan R Lacalle-Remigio https://orcid.org/0000-0002-2648-0191

Luis Béjar Prado https://orcid.org/0000-0001-5470-0537

Octavio Rivera Romero https://orcid.org/0000-0001-7212-9805

Article

Publisher ID: v13i1e50157

DOI: 10.2196/50157

PMC ID: 11053387

PubMed ID: 38608263

SO-VID: 11c4b049-ea5e-4761-a019-c9bea0931d46

Copyright © ©Enrique Dorronzoro-Zubiete, Jesús Castro-Marrero, Jorge Ropero, José Luis Sevillano-Ramos, María Dolores Hernández, Ramon Sanmartin Sentañes, Jose Alegre-Martin, Patricia Launois-Obregón, Isabel Martin-Garrido, Asuncion Luque Budia, Juan R Lacalle-Remigio, Luis Béjar Prado, Octavio Rivera Romero. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 12.04.2024.

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on https://www.researchprotocols.org, as well as this copyright and license information must be included.

History

Date received : 22 June 2023

Date accepted : 27 July 2023

Custom metadata

ext-peer-rev The proposal for this paper was peer reviewed by the Spanish Ministry of Science and Innovation. See the Multimedia Appendix for the peer-review report;

Keywords: acceptability,myalgic encephalomyelitis/chronic fatigue syndrome,long covid,mhealth,fatigue,physical activity,lifestyle health,personalized self-management,user-centered design

Data availability:

Keywords: acceptability, myalgic encephalomyelitis/chronic fatigue syndrome, long covid, mhealth, fatigue, physical activity, lifestyle health, personalized self-management, user-centered design

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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

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Abstract

Background

Objective

Methods

Results

Conclusions

International Registered Report Identifier (IRRID)

Related collections

JMIR: Research Protocols

Most cited references 13

Evolving phenotypes of non-hospitalized patients that indicate long COVID

Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology

Subjective but Not Actigraphy-Defined Sleep Predicts Next-Day Fatigue in Chronic Fatigue Syndrome: A Prospective Daily Diary Study.

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