Review Article
Approach to nursing diagnoses of people with myalgic encephalomyelitis / chronic fatigue syndrome: a qualitative meta-synthesis
Cristina Oter-Quintana
,
Jesús Esteban-Hernandez
,
Leticia Cuellar-Pompa
,
Candelas Gil-Carballo
,
Pedro Ruymán Brito-Brito
,
Angel Martín-García
,
show all
Received 06 Mar 2025, Accepted 16 Jun 2025, Published online: 01 Jul 2025
ABSTRACT
Objective
To identify human responses (diagnostic foci) that shape the experience of living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and how they manifest throughout the course of the illness.
Methods
A qualitative meta-synthesis was conducted. Original studies exploring the experience of living with ME/CFS in adults with a confirmed diagnosis, published in English or Spanish between 1994 and June 2024, were included. The literature search was carried out in Medline/Medline In-Process, Embase, CINAHL, PsycINFO, SCI-EXPANDED, SSCI, SciELO, Lilacs, and Cuiden. Data analysis was based on the human responses (diagnostic foci) from the NANDA-I Nursing Diagnoses Classification, 2021–2023, with findings structured according to Fennell’s Four-Phase Model.
Results
A total of 42 articles were selected. Twenty human responses (diagnostic foci) and three classes of the NANDA-I Nursing Diagnoses Classification were identified, interwoven across the different phases of the model. Some responses were present throughout all phases, while others, such as
Energy Balance and
Health Self-Management, became particularly relevant from Phase 2 onwards. Phases 3 and 4 were characterised by losses and processes of subjective reconstruction, with diagnostic foci such as
Sorrow, Spiritual Distress, and
Personal Identity being predominant.
Conclusions
The identified human responses (diagnostic foci) highlight how the contested and chronic nature of ME/CFS profoundly shapes the lived experience of those affected. The model derived from this review provides a structured framework for targeted nursing interventions, aligned with the phase each individual is experiencing.
KEYWORDS:
Acknowledgements
We extend our gratitude to Patricia A. Fennell for her interest in this work.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Data availability statement
Hosted on the Open Science Framework
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Supplemental Material
Supplemental data for this article can be accessed online at
https://doi.org/10.1080/21641846.2025.2522028.
Additional information
Funding
This work was supported by Second Prize for the Best Research Project in Care at the Third Edition of the Puerta de Hierro Awards for Research in Care [grant number HUPHM_2°PREMIO_2018].
Notes on contributors
Cristina Oter-Quintana
Cristina Oter-Quintana has been a lecturer at the Madrid Autonomous University since 2011. She holds a degree in Nursing and a BA in Social and Cultural Anthropology. Currently, she is pursuing a PhD in Health Sciences at the Rey Juan Carlos University. Her research focuses on nursing care for individuals with ME/CFS. She has authored multiple publications and contributed to research projects on the clinical application of nursing methodology and standardised nursing languages. She is a member of the Nursing and Health Care Research Group IDIPHISA.
Jesús Esteban-Hernandez
Jesús Esteban-Hernandez graduated in Biological Sciences in 1993 and obtained a PhD in Epidemiology and Public Health from Universidad Rey Juan Carlos in 2003. His doctoral thesis focused on emerging cardiovascular risk factors and chronic ischaemic heart disease. His research interests include pharmacovigilance, cardiovascular diseases, vaccine-preventable illnesses, cancer prognosis, and environmental contamination. He has published extensively in the fields of pharmacology, pharmacoepidemiology, vaccination, and health outcomes, with a strong focus on public health. His research aims to improve the understanding of risk factors in chronic diseases and contribute to preventive healthcare practices. He has also explored innovative approaches to disease management and prevention, particularly regarding emerging infectious diseases and chronic conditions. He is currently one of the principal investigators of a study examining the prevalence of fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and multiple chemical sensitivity in the Community of Madrid.
Leticia Cuellar-Pompa
Leticia Cuellar-Pompa is an information specialist with over 15 years of experience in medicine and evidence-based nursing. She has collaborated with various research groups in health technology assessment, contributing to the development of clinical practice guidelines, economic evaluations, and systematic reviews, among other research outputs. From 2010 to 2017, she coordinated the Virtual Library of the Canary Islands Health Service. She currently works as an information specialist at the Care Research Institute of the Santa Cruz de Tenerife Official Nurses' Association and as a lecturer at the Nuestra Señora de La Candelaria University School of Nursing, affiliated with the University of La Laguna.
Candelas Gil-Carballo
Candelas Gil-Carballo holds a degree in Modern and Contemporary History from the Universidad de Valladolid and a University Specialist Degree in Archivistics from the Universidad Nacional de Educación a Distancia (UNED). She has worked in several public libraries and, since 2014, has been a member of the Library of Medicine at the Autonomous University of Madrid, where she also serves as an Honorary Professor. In this role, she is responsible for teaching specialised courses on information management in biomedicine. She has collaborated on numerous review studies with various research groups and graduate students, particularly with the team led by Almudena Alameda-Cuesta and Cristina Oter-Quintana.
Pedro Ruymán Brito-Brito
Pedro Ruymán Brito-Brito is a registered nurse with a degree in Information Sciences and a master's degree in End-of-Life Care from the University of La Laguna, Tenerife. In 2011, he defended his doctoral thesis on psychosocial issues related to community health at the Department of Preventive Medicine and Public Health. A lecturer since 2004, he has dedicated his professional work to continuous and specialised training in Primary Care Management and active research. Since 2009, he has participated in European, national, and regional funded research projects. He has authored numerous publications in scientific journals, book chapters, and books, as well as presentations and lectures at conferences. He is a recognised expert in the use and application of the nursing process and standardised care languages in primary care, particularly in the psychosocial field, with a specific focus on loss and grief.
Angel Martín-García
Angel Martín-García is a specialist in Family and Community Nursing. He has served as an Associate Lecturer at the Faculty of Nursing, Physiotherapy, and Podiatry at the Complutense University of Madrid (2020-2024) and has also taught on nursing programmes at the Autonomous University of Madrid and the University of Castilla-La Mancha. With 29 years of experience as a clinical nurse in primary health care, he has extensive expertise in research and the clinical application of standardised nursing languages. Additionally, he has contributed as a collaborating researcher to various publicly funded research projects.
María Teresa Alcolea-Cosín
María Teresa Alcolea-Cosín has been a lecturer in the Nursing Department at the Autonomous University of Madrid since 2011. She holds a degree in Nursing and Physiotherapy, as well as a master's degree in Nursing Science. She is a specialist in Paediatric Nursing and has taught postgraduate courses on evidence-based nursing. She has also contributed to the master's programme in research and nursing care for vulnerable populations. She is currently working on her doctoral thesis, which explores the role of nurses in promoting attachment in primary care. In recent years, she has participated in research projects on childhood obesity and is actively involved in multiple educational innovation initiatives on simulation in nursing education.
Mercedes Martínez-Marcos
Mercedes Martínez-Marcos has been a lecturer in the Nursing Department at the Autonomous University of Madrid since 2011. She holds degrees in Nursing and Sociology and earned a PhD in 2016, focusing on caregiving and chronic illness. She teaches on both undergraduate and postgraduate nursing programmes. An accomplished researcher, she has authored multiple publications and contributed to various research projects on qualitative research, chronic illness, primary care, and the clinical application of nursing methodology. She is a member of the Health Care Research Group IDIPHISA.
María Teresa González Gil
María Teresa González Gil holds a PhD in Health Sciences (2010) from the Rey Juan Carlos University, a degree in Social and Cultural Anthropology (2003) from the Complutense University of Madrid, and a degree in Nursing (1997) from the Universidad Pontificia Comillas. She was awarded an intramural predoctoral scholarship to receive training in research methodology at the Health Care Research Unit (Investén) of the Carlos III Institute of Health (ISCIII). She later worked as a methodological consultant in qualitative health research and managed research projects before transitioning to academia. She has participated in multiple competitive and non-competitive research projects, resulting in publications in national and international journals. Her work primarily focuses on original qualitative studies and methodological reflections on qualitative research in health. She is a member of the Health Care Research Group IDIPHISA and serves as a reviewer for various national and international nursing journals.
Almudena Alameda-Cuesta
Almudena Alameda-Cuesta has been a lecturer at the Rey Juan Carlos University (Madrid) since 2004 in the Department of Nursing and Stomatology. She holds degrees in Nursing and Social and Cultural Anthropology, as well as a PhD (2015) with a thesis on fibromyalgia, chronic fatigue syndrome, and multiple chemical sensitivity. She teaches on both undergraduate and postgraduate nursing programmes. She has authored numerous publications and participated in research projects focused on gender inequalities in health, as well as the clinical application of nursing methodology and standardised nursing languages.
