Tag: qualitative research

Which needs do children, adolescents, and young adults with ME/CFS and their parents express and feel? – Qualitative study in Germany

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, multi-system disease that significantly deteriorates the quality of life for those affected. There is no established effective treatment, and a lack of research on what is needed by severely affected young people with ME/CFS and their caring parents to cope with the disease. The aim of this study was to investigate the needs of young people affected and their parents in order to subsequently build a tailored treatment model for this age group upon this basis.

Methods: Needs were explored using topic-guided focus groups and an adapted diary method. Patients participated either in an online focus group with five sessions discussing needs related to five topics (sports/physical activity/mobility, self-care, mental activity, social contacts, and school/vocational training/study/profession) or in the adaptive diary approach, receiving and answering the same stimuli and questions in the format of voice and text messages. Additionally, focus groups with parents comprised two sessions each, targeting needs of their children and themselves, respectively. Data were analysed by reflexive thematic analysis.

Results: We included 14 young people with ME/CFS (aged 12 to 25 years), of whom five participated in a focus group and nine in the adaptive diary approach. Eighteen parents took part in three focus groups, including three couples. In the patient sample, four themes of unmet needs were identified: (i) not being left alone with the disease, (ii) flexibility and understanding of healthcare providers and authorities, (iii) having to explain oneself less to others, and (iv) appreciation of the family filling part of the healthcare gap. Among parents, the following four themes were revealed: (i) not being left alone with the disease, (ii) health care adapted to ME/CFS, (iii) knowledge, understanding, and acceptance of ME/CFS, and (iv) confidence in dealing with ME/CFS.

Conclusions: The needs of young people with ME/CFS and their parents, respectively, overlap clearly and demonstrate the importance of a needs-based adaptation of healthcare services.

Source: Kircher A, Mayer-Huber S, Eberhartinger M, Mihatsch L, Apfelbacher C, Stojanov S, Behrends U. Which needs do children, adolescents, and young adults with ME/CFS and their parents express and feel? – Qualitative study in Germany. BMC Public Health. 2026 Sep 29;26(1):2942. doi: 10.1186/s12889-026-29549-6. PMID: 42864639; PMCID: PMC13656452. https://pmc.ncbi.nlm.nih.gov/articles/PMC13656452/ (Full text)

Knowing or not knowing: the practical and moral complexity of diagnostic-seeking pathways in situations of medical uncertainty

Abstract:

In this paper, we discuss the practical and moral complexities of diagnostic-seeking pathways for three uncertain medical conditions: fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and long COVID. We analyse qualitative data collected in the UK between 2023 and 2025, comprising in-depth interviews with medical professionals, researchers, and patients, as well as documentary sources.

Drawing on the anthropology and sociology of diagnosis, this paper discusses how chronic illness can be marked by challenging and unstable pathways, influenced by the organisation of the medical system and the resources patients have to navigate it. Diagnoses further do not guarantee a solution to the condition, and can, on the other hand, produce stigma. Medical professionals recognise the uncertain nature of these conditions and emphasise how diagnosis can play an instrumental role in providing patients with access to therapies, benefits, or acceptance. Patients discuss the complexity of the strategies they deploy not only to obtain a diagnosis but also to navigate the practical and moral complexities associated with their condition.

Analysing the practical and moral complexity of diagnostic-seeking pathways represents a way to enrich anthropological reflections on diagnosis by demonstrating how this key concept of biomedicine is strongly influenced by social, economic, and moral, as well as biological, factors.

Source: Greco C, Cross S. Knowing or not knowing: the practical and moral complexity of diagnostic-seeking pathways in situations of medical uncertainty. Anthropol Med. 2026 Sep 25:1-16. doi: 10.1080/13648470.2026.2709278. Epub ahead of print. PMID: 42788232. https://www.tandfonline.com/doi/full/10.1080/13648470.2026.2709278 (Full text)

Investigating the ME/CFS experience through qualitative analysis of memorial entries

Abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an impairing chronic condition characterized by exhaustion and worsening symptoms following exertion, often accompanied by pain, sleep issues, and cognitive issues. Historically, ME/CFS was not considered to be linked to mortality, however, more recent studies have questioned this assumption.

National Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Foundation maintains a memorial list consisting of deceased individuals who had ME/CFS. This secondary qualitative thematic analysis analyzed 505 entries on the National CFIDS Foundation memorial list, inductively developing a codebook from the publicly available memorial records. Two coders independently coded each entry before meeting to develop themes that incorporated the understanding of each coder.

Themes emerged within four societal levels: systemic neglect and institutional failure; clinical neglect and failures; social disconnection and advocacy; and personal burden and quality of life. Describing systemic neglect and institutional failure, entries recounted a lack of acknowledgement by health, insurance, and disability authorities, as well as a lack of investment in research and treatment of ME/CFS at the federal level. Negative healthcare experiences included misdiagnosis and misattribution of symptoms, dismissal, inadequate knowledge and experience with treating ME/CFS, and the recommendation of unhelpful treatments. The disbelief and misattribution by acquaintances described in the entries contributed to feelings of social isolation, leading some to turn to advocacy work and support groups.

Entries also described the individual impact of the condition, including functional impairments, the impact of symptoms, management strategies, financial stress, and mental health symptoms. Some deaths were directly and indirectly attributed to ME/CFS by individuals with ME/CFS and their acquaintances. This analysis provides a glimpse of the lived experience as well as death of individuals with ME/CFS through the lens of acquaintances of the deceased, emphasizing the substantial impact of the condition.

Source: Sirotiak Z, Amro HJ (2026) Investigating the ME/CFS experience through qualitative analysis of memorial entries. PLoS One 21(4): e0343374. https://doi.org/10.1371/journal.pone.0343374 https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0343374 (Full text)

A patient perspective on enduring symptoms – the unmet need

Abstract:

This short paper illustrates the lived experience of individuals with severe enduring symptoms: chronic, often debilitating conditions for which no clear medical explanation currently exists. Drawing on qualitative interviews, the paper highlights the profound suffering, isolation, and lack of medical support experienced by this underserved population. It examines the systemic barriers to care, including stigma, the absence of follow-up services, and the traumatising nature of some healthcare encounters, which can lead to healthcare avoidance even in the face of potentially life-threatening symptoms. It concludes with a call for improved training for clinicians, increased capacity within NHS services, and ring-fenced funding for biomedical research.
Source: Katharine Cheston. A patient perspective on enduring symptoms – the unmet need. Future Healthcare Journal: Volume 12, Issue 4, 2025, 100465. ISSN 2514-6645. https://doi.org/10.1016/j.fhj.2025.100465. https://www.sciencedirect.com/science/article/pii/S2514664525002462 (Full text)

Protocol for a qualitative study on the online connections of people with ME/CFS and the relationship between these online connections and offline lives

Abstract:

Introduction: Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a debilitating chronic illness that affects the central nervous and immune systems, causing core symptoms of extreme fatigue, post-exertional malaise, cognitive issues and sleep disturbance. With reported higher online use than in other chronic illnesses, people with ME/CFS are often housebound and isolated and may struggle to maintain social relationships. Due to a lack of biomarkers, the illness is often contested, causing invalidation and stigma for those affected. This study aims to broaden the knowledge on how people with ME/CFS gain online connections and whether and how these connections integrate into and impact their everyday life.

Methods and analysis: Qualitative interviews will be conducted with adults aged over 18 years with a diagnosis or self-diagnosis of ME or CFS (n=20-25). A semi-structured topic guide will be used to interview participants and explore online connections and relationships between these and everyday life with ME/CFS. Interviews will be recorded and transcribed verbatim. Data will be thematically analysed to gain in-depth insight into this largely unexplored topic.

Ethics and dissemination: The study has ethical approval from the University of Birmingham (reference: RN_1722-Jun2024), and informed written consent will be provided by all participants. Findings will be published in peer-reviewed journals and disseminated to advocacy organisations and health professionals seeking to offer remote support for people with ME/CFS and their families. This study will provide crucial insight into online use and how it can guide the formulation of management plans for people who may currently receive no support from health professionals at all.

Source: Shortland DL, Fazil Q, Lavis A. Protocol for a qualitative study on the online connections of people with ME/CFS and the relationship between these online connections and offline lives. BMJ Open. 2025 Aug 19;15(8):e099557. doi: 10.1136/bmjopen-2025-099557. PMID: 40829849. https://bmjopen.bmj.com/content/15/8/e099557 (Full text)

Assessing the influence of lived-experience experts on healthcare providers in a virtual community of practice: a qualitative study

Abstract:

Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other poorly understood post-acute infection syndromes (PAIS) can present with unexplained symptoms or conditions that may be misunderstood by healthcare providers, causing delays in diagnosis and care. To address these issues, the Centers for Disease Control and Prevention (CDC) funded the Long COVID and Fatiguing Illness Recovery Program (LC&FIRP), initiated as a pilot project to assess whether providing tele-mentoring and other online education for primary care providers could help them improve the quality of life and support the recovery of their patients with these conditions.

The LC&FIRP multi-disciplinary team-based care approach is built on the Extension for Community Healthcare Outcomes (ECHO) learning model, which is an evidence-based virtual learning framework developed by the University of New Mexico and designed to disseminate and implement best practices, especially in under-resourced areas. A distinctive feature of LC&FIRP was the inclusion of lived-experience experts. To explore the influence of lived-experience experts on the care patients received, we collected the educational recommendations provided by the lived-experience experts during webinar sessions (January 2022-March 2024) and grouped these by themes.

The major themes that emerged included validation of patients’ illness experience; attitudes and beliefs about Long COVID, ME/CFS, and PAIS; understanding patients’ challenges and communicating with empathy; navigating referrals; recognizing and supporting disability; and supporting self-care. Investigators also interviewed patients of the Family Health Centers of San Diego (FHCSD) about their experiences receiving care from participating primary care providers and employed content analysis methods to code interview transcripts to identify themes among patients’ perspectives. Positive comments from the patients about topics emphasized by the lived-experience experts provided evidence of providers’ uptake and application of the experts’ recommendations and support the value of involving lived-experience experts in medical education to improve health services.

Source: Weaver SS, Carry M, Bertolli J, Godino J, Struminger B, Taren D, Scott JD, Sharp SP, Samaniego J, Bean DR, Issa A, Lin JS, Unger ER, Ramers CB. Assessing the influence of lived-experience experts on healthcare providers in a virtual community of practice: a qualitative study. Front Health Serv. 2025 Jun 27;5:1562651. doi: 10.3389/frhs.2025.1562651. PMID: 40656206; PMCID: PMC12245761. https://pmc.ncbi.nlm.nih.gov/articles/PMC12245761/ (Full text)

Voice of the patient: people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) share in their own words

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, debilitating illness affecting millions of people worldwide. Patients with ME/CFS often feel misunderstood and report facing barriers to healthcare utilization.

Objective: We report on a Voice of the Patient (VOP) series that used tenets from photovoice and hermeneutic phenomenology methods. The approach prioritized respecting and engaging patients as they share individual experiences of living with ME/CFS.

Methods: We developed a 5-step process that could be replicated for interviewing patients in their own words. The process prioritized respecting patients while developing, documenting, and sharing individual accounts of living with ME/CFS. The standardized process for gathering each VOP story enabled individuals to share and participate on their own terms.

Results: Over four years, eight VOP stories were completed and posted on CDC’s ME/CFS website. The stories received over 196,000 page views. Each story was completed in approximately six months. Participants expressed gratitude for the opportunity to share experiences and were appreciative of the process that involved them in the development of stories.

Conclusions: Qualitative methods guided the process for participants taking a central role in sharing stories, which in turn may help educate about patient experiences with ME/CFS. Standardization of steps enabled consistency and transparency. Building flexibility into the process allowed interviewing a range of people with ME/CFS (i.e. bed bound to working) and enabled patients to give narratives in their voice. This process may help to share experiences of people with other chronic diseases or infection associated chronic conditions.

Source: Brimmer DJ, Lin JS, Unger ER. Voice of the patient: people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) share in their own words. Fatigue. 2025;13(2):1-11. doi: 10.1080/21641846.2024.2444826. PMID: 40123856; PMCID: PMC11926923. https://pmc.ncbi.nlm.nih.gov/articles/PMC11926923/ (Full text)

The most severely ill patients with ME/CFS in Denmark

Abstract:

A subset of patients suffering from ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome) are severely ill, bedridden, and dependent on personal care. This study aims to describe the medical and social conditions of the most severely ill patients with ME/CFS in Denmark and the situation of their caregivers.

Qualitative data were collected during 19 home visits to severely ill patients in Denmark. The patients interviewed were characterised by extremely low physical and mental functioning and longstanding illness. Relative to their dire condition, the participants received very little help from medical professionals and health services such as institutions and hospitals. There was an overall negative interaction with psychiatric interventions, and the relations between patients and the health system were generally characterised by mutual distrust. Social services were often dismissed, and obtaining the services was often described as more of a burden than a benefit.

In conclusion, the most severely ill patients with ME/CFS and their caregivers must be characterised as a systematically neglected patient group not comparable to any other similarly ill group.

Source: la Cour, P. (2024). The most severely ill patients with ME/CFS in Denmark. Cogent Public Health, 11(1). https://doi.org/10.1080/27707571.2024.2359958 https://www.tandfonline.com/doi/full/10.1080/27707571.2024.2359958 (Full text)

An exploration of the experiences and self-generated strategies used when navigating everyday life with Long Covid

Abstract:

Background: Around one in ten people who contract Covid-19 report ongoing symptoms or ‘Long Covid’. Without any known interventions to cure the condition, forms of self-management are routinely prescribed by healthcare professionals and described by people with the condition. However, there is limited research exploring what strategies are used to navigate everyday life with Long Covid, and experiences that initiate development of these strategies. Our study aimed to explore the range and influence of self-generated strategies used by people with Long Covid to navigate everyday life within the context of their own condition.

Methods: Forming part of the Long Covid Personalised Self-managemenT support co-design and EvaluatioN (LISTEN) project, we conducted a qualitative study using narrative interviews with adults who were not hospitalised with Covid-19. Participants aged over 18 years, who self-identified with Long Covid, were recruited from England and Wales. Data were analysed with patient contributors using a reflexive thematic analysis.

Results: Eighteen participants (mean age = 44 years, SD = 13 years) took part in interviews held between December 2021 and February 2022. Themes were constructed which depicted 1) the landscape behind the Long Covid experience and 2) the everyday experience of participants’ Long Covid. The everyday experience comprised a combination of physical, emotional, and social factors, forming three sub-themes: centrality of physical symptoms, navigating ‘experts’ and the ‘true colour’ of personal communities, and a rollercoaster of psychological ambiguity). The third theme, personal strategies to manage everyday life was constructed from participants’ unique presentations and self-generated solutions to manage everyday life. This comprised five sub-themes: seeking reassurance and knowledge, developing greater self-awareness through monitoring, trial and error of ‘safe’ ideas, building in pleasure and comfort, and prioritising ‘me’.

Conclusions: Among this sample of adults with Long Covid, their experiences highlighted the unpredictable nature of the condition but also the use of creative and wide ranging self-generated strategies. The results offer people with Long Covid, and healthcare professionals supporting them, an overview of the collective evidence relating to individuals’ self-management which can enable ways to live ‘better’ and regain some sense of identity whilst facing the impact of a debilitating, episodic condition.

Trial registration: LISTEN ISRCTN36407216.

Source: Leggat FJ, Heaton-Shrestha C, Fish J, Siriwardena AN, Domeney A, Rowe C, Patel I, Parsons J, Blair J, Jones F. An exploration of the experiences and self-generated strategies used when navigating everyday life with Long Covid. BMC Public Health. 2024 Mar 13;24(1):789. doi: 10.1186/s12889-024-18267-6. PMID: 38481230; PMCID: PMC10938753. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10938753/ (Full text)

A suffering body, hidden away from others: The experience of being long-term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence

Abstract:

In this article, we present findings from a qualitative study examining how young women experience being long-term bedridden with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), during childhood and adolescence. The aim is to explore how young women who fell ill with ME/CFS during childhood and adolescence look back on their lived experience of being long-term bedridden from the vantage point of being fully or partially recovered.

Informed by a phenomenological theoretical perspective, the researchers applied a narrative methodological approach involving the analysis of interviews with 13 women, aged 16–29 years at the time of the interview. Attention was particularly paid to how participants structured their narratives and to the events (telling moments) they identified as important.

Four major storylines were developed: Ambivalent responses to the presence of others; A body on the edge of life; An eternity in the dark; and Recasting painful memories of being bedridden and alone.

Based on our findings, we argue that the experience of being long-term bedridden with ME/CFS during childhood and adolescence can be understood and communicated as a plot in which individuals find themselves pushed to the extreme limit of suffering and loneliness.

Source: Krabbe, S. H., Bjorbækmo, W. S., Mengshoel, A. M., Sveen, U., & Groven, K. S. (2024). A suffering body, hidden away from others: The experience of being long-term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence. Nursing Inquiry, e12625. https://doi.org/10.1111/nin.12625 https://onlinelibrary.wiley.com/doi/10.1111/nin.12625 (Full text)