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Fibromyalgia is a contested illness with unknown aetiology and poorly understood development. The present aim is to explore the pre-diagnostic illness trajectory narrated by individuals recently diagnosed with fibromyalgia (FM). Individual interviews about the course of the illness were conducted with seven women and three men (age from early 20s to 50s) who had recently been diagnosed with FM. A narrative analysis of what the interviewees told and how the stories were narrated was conducted. The findings are expressed by three storylines. \"Strenuous life and alerted body preluding illness\" displays a difficult, unsupported life and bodily sensitivity to stimuli. \"Recurrent pains unfolding to become a lasting and complex illness\" describes individuals pushing themselves to meet social obligations until they come to a full stop. \"Diagnosed but still uncertain presence and future\" portrays satisfaction with finally being diagnosed with FM and being supported by others, but still there are no solutions as to do about it. The three storylines portray a long, winding trajectory of suffering starting before the onset of illness, and unfolding illness gradually becoming persistent and overwhelming. Finally, a diagnosis of FM is arrived at, but how the situation will evolve is uncertain.

Designed by a group of ME/CFS researchers and health professionals, the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) has received funding from the European Cooperation in Science and Technology (COST)—COST action 15111—from 2016 to 2020. The main goal of the Cost Action was to assess the existing knowledge and experience on health care delivery for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in European countries, and to enhance coordinated research and health care provision in this field. We report our findings and make recommendations for clinical diagnosis, health services and care for people with ME/CFS in Europe, as prepared by the group of clinicians and researchers from 22 countries and 55 European health professionals and researchers, who have been informed by people with ME/CFS.

The condition known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is poorly understood. Simplified medical models tend to neglect the complexity of illness, contributing to a terrain of uncertainty, dilemmas and predicaments. However, despite pessimistic pictures of no cure and poor prognosis, some patients recover. This study's purpose is to provide insight into people's experiences of suffering and recovery from very severe CFS/ME and illuminate understanding of how and why changes became possible. Fourteen former patients were interviewed about their experiences of returning to health. A narrative analysis was undertaken to explore participants' experiences and understandings. We present the result through one participant's story. The analysis yielded a common plotline with a distinct turning point. Participants went through a profound narrative shift, change in mindset and subsequent long-time work to actively pursue their own healing. Their narrative understandings of being helpless victims of disease were replaced by a more complex view of causality and illness and a new sense of self-agency developed. We discuss the illness narratives in relation to the disease model and its shortcomings, the different voices dominating the stories at different times in a clinically, conceptually, and emotionally challenging area.

ME/CFS is a chronic, complex, multisystem disease that often limits the health and functioning of the affected patients. Diagnosing patients with ME/CFS is a challenge, and many different case definitions exist and are used in clinical practice and research. Even after diagnosis, medical treatment is very challenging. Symptom relief and coping may affect how patients live with their disease and their quality of life. There is no consensus on which diagnostic criteria should be used and which treatment strategies can be recommended for patients. The purpose of the current project was to map the landscape of the Euromene countries in respect of national guidelines and recommendations for case definition, diagnosis and clinical approaches for ME/CFS patients. A 23 items questionnaire was sent out by email to the members of Euromene. The form contained questions on existing guidelines for case definitions, treatment/management of the disease, tests and questionnaires applied, and the prioritization of information for data sampling in research. We obtained information from 17 countries. Five countries reported having national guidelines for diagnosis, and five countries reported having guidelines for clinical approaches. For diagnostic purposes, the Fukuda criteria were most often recommended, and also the Canadian Consensus criteria, the International Consensus Criteria and the Oxford criteria were used. A mix of diagnostic criteria was applied within those countries having no guidelines. Many different questionnaires and tests were used for symptom registration and diagnostic investigation. For symptom relief, pain and anti-depressive medication were most often recommended. Cognitive Behavioral Therapy and Graded Exercise treatment were often recommended as disease management and rehabilitative/palliative strategies. The lack of consistency in recommendations across European countries urges the development of regulations, guidance and standards. The results of this study will contribute to the harmonization of diagnostic criteria and treatment for ME/CFS in Europe.

Background The number of patients with long-term chronic diseases is increasing. These patients place a strain on health care systems and health care professionals (HCPs). Presently, we aimed to systematically review the literature on HCPs’ experiences working with patients with long-term chronic diseases such as type 2 diabetes, chronic obstructive pulmonary disease (COPD), and chronic kidney disease (CKD). Method A systematic search of papers published between 2002 and July 2019 was conducted in the Embase, AMED, PsycINFO, MEDLINE, CINAHL, and COCHRANE databases to identify studies reporting qualitative interviews addressing HCPs’ experiences working with adults with COPD, CKD or type 2 diabetes. An interdisciplinary research group were involved in all phases of the study. With the help of NVivo, extracts of each paper were coded, and codes were compared across papers and refined using translational analysis. Further codes were clustered in categories that in turn formed overarching themes. Results Our comprehensive search identified 4170 citations. Of these, 20 papers met our inclusion criteria. Regarding HCPs’ experiences working with patients with COPD, CKD, or type 2 diabetes, we developed 10 sub-categories that formed three overarching main themes of work experiences: 1) individualizing one’s professional approach within the clinical encounter; 2) managing one’s emotions over time; 3) working to maintain professionalism. Overall these three themes suggest that HCPs’ work is a complex balancing act depending on the interaction between patient and professional, reality and professional ideals, and contextual support and managing one’s own emotions. Conclusion Few qualitative studies highlighted HCPs’ general working experiences, as they mainly focused on the patients’ experiences or HCPs’ experiences of using particular clinical procedures. This study brings new insights about the complexity embedded in HCPs’ work in terms of weighing different, often contrasting aspects, in order to deliver appropriate practice. Acknowledging, discussing and supporting this complexity can empower HCPs to avoid burning out. Leaders, health organizations, and educational institutions have a particular responsibility to provide HCPs with thorough professional knowledge and systematic support. Trial registration PROSPERO number: CRD42019119052 .

Purpose: Research shows that gender has a substantial impact on the health behaviour such as expression of physical symptoms like persistent pains and aches. However, there is yet little knowledge about the gendered aspect of pain by men who suffer from typical female diseases like fibromyalgia. The purpose of the study was to elucidate the interplay between illness and gender by exploring life-stories of men who suffer from fibromyalgia. Methods: The data were collected through life-story interviews of eight men suffering from fibromyalgia. A narrative methodology for analysis was applied to explore the storytelling and the linguistic and performative aspects of the life-stories. Results: The masculine identity of the participants was re-negotiated by comparisons to other men and life before symptom onset, and by discussing expectations and beliefs of how men should act in contemporary societies. The transition from experiencing a strong, active and reliable body to experiencing a painful, vulnerable and helpless body was perceived as fundamental. Conclusions: Self-management and rehabilitation of fibromyalgia it is not only about learning to manage the symptoms but also about the struggle to find coherence in life through re-constructing gender identity that is acceptable both for the individual and for the community.

Objective This study aimed to evaluate if sustained trapezius muscle activity predicts neck and shoulder pain over a 2.5-year period. Methods Forty young adults (15 hairdressers, 14 electricians, 5 students and 6 with various work) were followed during their first years of working life. Self-reported neck and shoulder pain during the last four weeks was assessed seven times over the observational period. Upper-trapezius muscle activity was measured during a full working day by bilateral surface electromyography (EMG) at baseline (winter 2006/7). Sustained trapezius muscle activity was defined as continuous muscle activity with amplitude >0.5% EMG max lasting >4 minutes. The relative time of sustained muscle activity during the working day was calculated and further classified into low (0—29%), moderate (30—49%) and high (50—100%) level groups. Results Generalized estimating equations (GEE), adjusted for time, gender, mechanical workload, control-over-work intensity, physical activity, tobacco use, and prior neck and shoulder pain, showed that participants with a high level of sustained muscle activity had a rate of neck and shoulder pain three times higher than the low level group during a 2.5-year period. The association was strongest at the same time and shortly after the EMG measurement, indicating a time-lag of ≤6 months. Conclusion The results support the hypothesis that sustained trapezius muscle activity is associated with neck and shoulder pain. This association was strongest analyzing cross-sectional and short-term effects.

To explore the recovery narratives of 13 young women who had fallen ill with severe Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), during childhood and adolescence, with the focus on what they had to say about their past experiences from the perspective of the present. A qualitative narrative approach, informed by a phenomenological theoretical perspective, was adopted to explore what the women found significant and meaningful in their recovery process. Data analysis of in-depth narrative interviews was performed which are presented to readers through the stories of two particular participants. The first story describes how one participant made a recovery by testing her body's tolerance and working to create a more confident self. The second story describes a complex exploration of possibilities for action in recovery, along with a struggle to make sense of setbacks and hold on to what has been gained. Recovering from ME/CFS emerges as an inter-personal, contextual, fragile and nonlinear process of homecoming, based on gradually rising bodily based self-knowledge. Illness slowly fades away into the background, and there is the prospect of a healthier tomorrow.

Background Fibromyalgia (FM) is a contested, chronic widespread pain syndrome on which recommended therapies have short-lasting, moderate effects. Nevertheless, some patients become symptom-free, and their recovery experiences inspired us to develop a patient-centred recovery-oriented programme (PROP) delivered in a group format. Presently, we describe the theoretical rationale, purpose and content of the PROP, and its meanings for clinicians and patients. Methods A multidisciplinary clinical team, a leader of a rehabilitation unit, and two researchers coproduced the PROP. Five full-day seminars were arranged to bridge research and clinical experiences. Qualitative studies about patients’ illness and recovery experiences and questions by researchers facilitated reflections on clinical experiences. The meaning of the PROP was examined using focus group and individual interviews with patients and clinicians immediately after completing the course and after 1–1.5 years. Results The biopsychosocial model displays the research evidence across biological, mental and social impacts of FM, justifying that life stress can be an illness-maintaining factor in FM. The content addresses enabling patients to heal their own life and self by modifying life stress. Patients engage in making sense of the relationship between FM, themselves, and life through exploring, discovering and creating appropriate solutions for their daily social life. The PROP reduced uncertainties and brought a positive attitude and hope to the groups. After 1 year, patients are still engaged in recovery work, experience more good days, and maintain hope for further recovery. By sharing and reflecting on clinical experiences, a unified clinical team was established that continues to develop their competency. Conclusion To our knowledge, the PROP is the first programme for patients with FM that results from a process of coproducing knowledge, is based on explicit theoretical rationale, and facilitates a personal experiential recovery process. PROP is found to be meaningful and to work by patients and clinicians.

Aims To explore the narratives of patients about receiving a diagnosis of obstructive sleep apnoea and using a continuous positive airway pressure device. Design A qualitative design with a narrative approach. Methods Participants with personal experience of using a continuous positive airway pressure device were recruited through purposive sampling. Two women and five men were interviewed in 2017. The data material was subjected to a narrative analysis. Results Two storylines portraying two different trajectories of continuous positive airway pressure use were identified: “A route of devotion” reflects patients experiencing immediate health benefits, which lead to committed use. “A route of negotiations” is characterized by more irregular use, and the perceived benefits were less evident than for those displaying a devoted route. Individuals adjust to a continuous positive airway pressure device differently based on their prior and present life situation and whether use of the device is experienced as an opportunity to regain ordinary life or as an obstacle to maintaining ordinary life.