A scoping review of 'Pacing' for management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): lessons learned for the long COVID pandemic.

BACKGROUND: Controversy over treatment for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a barrier to appropriate treatment. Energy management or pacing is a prominent coping strategy for people with ME/CFS. Whilst a definitive definition of pacing is not unanimous within the literature or healthcare providers, it typically comprises regulating activity to avoid post exertional malaise (PEM), the worsening of symptoms after an activity. Until now, characteristics of pacing, and the effects on patients' symptoms had not been systematically reviewed. This is problematic as the most common approach to pacing, pacing prescription, and the pooled efficacy of pacing was unknown. Collating evidence may help advise those suffering with similar symptoms, including long COVID, as practitioners would be better informed on methodological approaches to adopt, pacing implementation, and expected outcomes. OBJECTIVES: In this scoping review of the literature, we aggregated type of, and outcomes of, pacing in people with ME/CFS. ELIGIBILITY CRITERIA: Original investigations concerning pacing were considered in participants with ME/CFS. SOURCES OF EVIDENCE: Six electronic databases (PubMed, Scholar, ScienceDirect, Scopus, Web of Science and the Cochrane Central Register of Controlled Trials [CENTRAL]) were searched; and websites MEPedia, Action for ME, and ME Action were also searched for grey literature, to fully capture patient surveys not published in academic journals. METHODS: A scoping review was conducted. Review selection and characterisation was performed by two independent reviewers using pretested forms. RESULTS: Authors reviewed 177 titles and abstracts, resulting in 17 included studies: three randomised control trials (RCTs); one uncontrolled trial; one interventional case series; one retrospective observational study; two prospective observational studies; four cross-sectional observational studies; and five cross-sectional analytical studies. Studies included variable designs, durations, and outcome measures. In terms of pacing administration, studies used educational sessions and diaries for activity monitoring. Eleven studies reported benefits of pacing, four studies reported no effect, and two studies reported a detrimental effect in comparison to the control group. CONCLUSIONS: Highly variable study designs and outcome measures, allied to poor to fair methodological quality resulted in heterogenous findings and highlights the requirement for more research examining pacing. Looking to the long COVID pandemic, our results suggest future studies should be RCTs utilising objectively quantified digitised pacing, over a longer duration of examination (i.e. longitudinal studies), using the core outcome set for patient reported outcome measures. Until these are completed, the literature base is insufficient to inform treatment practises for people with ME/CFS and long COVID.

A Cross-Sectional Study of Symptom Prevalence, Frequency, Severity, and Impact of Long-COVID in Scotland: Part I.

BACKGROUND: Commonly reported symptoms of long COVID may have different patterns of prevalence and presentation across different countries. While some limited data have been reported for the United Kingdom, national specificity for Scotland is less clear. We present a cross-sectional survey to examine the symptom prevalence, frequency, and severity of long COVID for people living with the condition in Scotland. METHODS: An online survey was created in the English language and was available between April 21, 2022 and August 5, 2022. Participants were included if they were ≥18 years old, living in Scotland, and had self-diagnosed or confirmed long COVID; and excluded if they were hospitalized during their initial infection. Within this article we quantify symptom prevalence, frequency, severity, and duration. RESULTS: Participants (n = 253) reported the most prevalent long-COVID symptoms to be post-exertional malaise (95%), fatigue/tiredness (85%), and cognitive impairment (68%). Fatigue/tiredness, problems with activities of daily living (ADL), and general pain were most frequently occurring, while sleep difficulties, problems with ADL, and nausea were the most severe. Scottish Index of Multiple Deprivation associated with symptom number, severity, and frequency, whereas vaccine status, age, sex, and smoking status had limited or no association. CONCLUSIONS: These findings outline the challenges faced for those living with long COVID and highlight the need for longitudinal research to ascertain a better understanding of the condition and its longer-term societal impact.

A Cross-Sectional Study of Symptom Prevalence, Frequency, Severity, and Impact of Long COVID in Scotland: Part II.

BACKGROUND: There has been some effort to map the prevalence, frequency, and severity of symptoms of long COVID at local and national levels. However, what is frequently absent from such accounts is details of the impact the disease and its symptoms have had on those living with the condition. In this article, we present details of the impact on work, caring, and mental health gathered using a cross-sectional survey. METHODS: Data were collected using an online survey that was available from April 21, 2022, to August 5, 2022. Included participants had either self-diagnosed or confirmed long COVID, were living in Scotland, and were aged ≥18 years. Hospitalization during initial COVID-19 infection was an exclusion criterion. Participants were asked to report on the impact of their illness on everyday activities such as working, studying, or caring. They also completed an assessment of their current mood. RESULTS: People with long COVID were often severely impacted in their ability to work and study. Severe impact on work and study were predicted by more severe and more frequent fatigue, more severe pain, and more severe cognitive impairment. Respondents' ability to care for child dependents was also associated with more severe and more frequent fatigue, and more severe cognitive impairments. More severe pain associated with greater impact on adult care. Negative mood correlated most strongly with frequency and severity of neurological symptoms, including lack of attention, loss of smell, impaired sense of smell, loss of taste, impaired sense of taste, and loss of appetite. CONCLUSIONS: Long COVID has a significant impact on ability to work, study, and care for dependents. The severity of this impact is associated with specific symptom burden, including fatigue, pain, and cognitive impairment.

Outcomes from a One-Week Adapted Sport and Adapted Adventure Recovery Programme for Military Personnel.

BACKGROUND: The Battle Back Centre offers a bespoke, Self Determination Theory-oriented adapted sport and adventurous training programme centred on experiential learning and reflection to support the recovery of military personnel. AIM: To identify the short-term impact of participation in the programme on positive mental health and psychological need satisfaction. METHOD: Participants were 978 wounded, injured and sick (WIS) personnel classified as: Wounded (battle casualties), Injured (non-battle casualties) and Sick (mental/physical illness). Participants completed the Basic Need Satisfaction in General Scale (Gagné, 2003) and Warwick and Edinburgh Mental Well Being Scale (Tennant et al. 2006) on arrival and course completion. RESULTS: All measures of positive mental health and psychological need satisfaction showed statistically significant increases, with a large effect size, from baseline to course completion (mean ± SD change in positive mental health, competence, autonomy and relatedness were 7.19 ± 9.61, 0.46 ± 0.9, 0.27 ± 0.84, 0.26 ± 0.86, respectively, p < 0.05). While the average magnitude of the intervention effect for positive mental health (16%) is comparable or greater than other reported interventions, changes were achieved in a shorter time. CONCLUSION: Findings highlight the positive short-term effect adapted sport and adventurous activities have for WIS personnel. DECLARATION OF INTEREST: Work supported by The Royal British Legion.

'Leave Your Ego at the Door': A Narrative Investigation into Effective Wingsuit Flying.

In recent years there has been a rapid growth in interest in extreme sports. For the most part research has focused on understanding motivations for participation in extreme sports and very little research has attempted to investigate the psychological structure of effective performance. Those few studies that have attempted to explore this issue have tested models designed for traditional sport on adventure sports. However, extreme sports are not the same as adventure sports or traditional sports. This study employed a narrative approach to investigate experiences of effective performance in the extreme sport of proximity wingsuit flying. An overarching theme we labeled 'leave your ego at the door,' emerged based on four sub-themes: (1) know thy self, (2) know thy skills, (3) know the environment now, and (4) tame the 'inner animal.' These themes are presented and discussed in relation to performance and discovery narratives identified within elite sport, thereby shedding light on how participants' experiences of the extreme sport of proximity wingsuit flying differ from dominant stories within traditional sports.

Becoming a narrative researcher: a story of moments, realisations and turnarounds / Tornando-se a investigadora narrativa: uma história de momentos, realizações e mudanças de curso / Convertirse en investigadora narrativa: una historia de momentos, realizaciones y cambios de rumbo

Narrative is now an accepted research methodology across the social sciences. However, for researchers from positivistic backgrounds, becoming a narrative researcher can be complex. In this article we share four stories to explore the dilemmas and challenges that Lorena, as PhD student, and David, as supervisor, experienced during Lorena's turn to narrative. We use a duoethnography to focus on pivotal moments during Lorena's journey that elicited important learning and personal development. By sharing these stories, we aim to stimulate reflection and dialogue between students and supervisors who may be embarking on their own journeys towards narrative(AU)

: A narrativa é atualmente uma metodologia de pesquisa aceita em todas as ciências sociais. No entanto, para pesquisadores de fonte positivista, tornar-se um pesquisador narrativo pode ser complexo. Neste artigo compartilhamos quatro histórias para explorar os dilemas e desafios que Lorena, como doutoranda, e David, como supervisor, experimentaram durante a mudança de Lorena para a narrativa. Usamos uma duoetnografia para nos concentrar em momentos cruciais durante a jornada de Lorena, que despertou importantes aprendizagens e desenvolvimento pesoal. Ao compartilhar essas histórias, buscamos estimular a reflexão eo diálogo entre alunos e supervisores que podem estar começando em suas próprios viagem para a narrativa(AU)

La narrativa es actualmente una metodología de investigación aceptada en todas las ciencias sociales. Sin embargo, para los investigadores de origen positivista, convertirse en investigador narrativo puede ser complejo. En este artículo compartimos cuatro historias para explorar los dilemas y desafíos que Lorena, como estudiante de doctorado, y David, como supervisor, experimentaron durante el cambio de Lorena a la narrativa. Usamos una etnografía a dúo para centrarnos en momentos clave durante el viaje de Lorena, lo que generó importantes aprendizajes y desarrollo personal. Al compartir estas historias, pretendemos estimular la reflexión y el diálogo entre estudiantes y supervisores que pueden estar empezando sus propios viajes hacia la narrativa(AU)

Narrative transformation among military personnel on an adventurous training and sport course.

In the wake of recent wars, some military personnel face considerable physical and mental health problems. In this article I explore the effects of an adapted sport and inclusive adventurous training course for military personnel who have experienced physical injury and/or psychological trauma. Using a dialogical narrative approach, I analyzed stories shared by six soldiers during the course to explore the effects of involvement. Participation in the course seemed to facilitate a narrative transformation or opening corresponding to a broadening identity and sense of self. Story plots progressed from a failing monological narrative, through a chaos narrative, toward a dialogical quest narrative prioritizing immersion in an intense present, a developing self, and a relational orientation. On the basis of narrative theory, I suggest this transformation holds positive consequences for the health and well-being of military personnel who have experienced injury and/or trauma.

Psychosocial outcomes of an inclusive adapted sport and adventurous training course for military personnel.

PURPOSE: To explore the psychosocial outcomes of an inclusive adapted sport and adventurous training course that aims to support the rehabilitation and personal development of military personnel who have sustained physical and/or psychological disability. METHOD: Narrative life story interviews were conducted with 11 men aged 20-43 taking part in one of the 5-day courses. A thematic narrative analysis was conducted, focusing on accounts that provided insights into personally meaningful psychosocial outcomes of the course. FINDINGS: We identified six themes, falling into two distinct clusters. "Bringing me back to myself" was achieved through the themes of (1) returning to activity, (2) rediscovering a sense of purpose, and (3) reconnecting to others. "New rooms to explore" was realised through (4) experiencing new activities, (5) being valued/respected/cared for and (6) being inspired by other people. CONCLUSION: Involvement in the course stimulated a balance of present- and future-oriented psychosocial outcomes through which participants both recreated aspects of themselves that had been lost through injury/trauma and moved forward with their lives as a result of new horizons of possibility. IMPLICATIONS FOR REHABILITATION: This 5-day inclusive adapted sport and adventurous training course offered meaningful psychosocial outcomes among military personnel who had experienced physical and/or psychological disability. The course helped participants recover aspects of their previous life and self through becoming physically active again, rediscovering a sense of purpose and reconnecting to others. Participants describe a broadening of life horizons as a result of the course, through new activities, being valued/respected/cared for, and being inspired by other people.

The ethos of physical activity delivery in mental health: a narrative study of service user experiences.

Our research into the physical activity experiences of people with severe mental illness has led us to take seriously the social and cultural environment in which physical activity is delivered. In this study, through narrative methodology, we examine service user accounts of physical activity to illuminate the characteristics of physical activity groups that are experienced as positive, helpful, or beneficial. We present several qualities and show how effective leadership and coaching is central to these qualities being present. We conclude that it is not so much what activity is delivered, but how it is delivered that is critical for sustained participation and positive outcomes.

Social support for and through exercise and sport in a sample of men with serious mental illness.

Social support is important for people experiencing serious mental illness and is also important during the initiation and maintenance of exercise. In this article we draw on interpretive research into the experiences of 11 men with serious mental illness to explore four dimensions of social support both for and through exercise. Our findings suggest that informational, tangible, esteem, and emotional support were both provided for and given by participants through exercise. We conclude that experiences of both receiving and giving diverse forms of support in this way are significant for some people living with and recovering from serious mental illness.

Physical activity in the process of psychiatric rehabilitation: theoretical and methodological issues.

Physical activity can potentially perform a valuable role within the context of psychiatric rehabilitation in terms of physical and mental health benefits. Theoretical and applied considerations have driven the search for the causal mechanism(s) that underpin mental health change through physical activity. To date, no single mechanism has been found to consistently explain changes. A key reason for this is that the occurrence of, and recovery from, mental health problems is influenced by many diverse factors. Both theoretical and methodological issues affect our ability to identify and understand these factors and, subsequently, our ability to promote psychiatric rehabilitation through physical activity. Alternative theoretical and methodological approaches are discussed here with the aim of encouraging a broad-based research agenda which will most effectively serve the needs of mental health service users. These approaches differ widely in scope but all share one thing in common: a personalized understanding of the process of mental health change in psychiatric rehabilitation.

An alternative view of psychological well-being in cardiac rehabilitation: Considering temperament and character.

BACKGROUND: Research suggests that personality is related to recovery from cardiac events, yet few conceptions of personality provide hope or possibility of improvement for patients with the least adaptive personality types. Psychobiological theory of personality has potential in this regard, but, to date, no research has investigated temperament and character in cardiac settings. AIM: To explore relationships between temperament, character and psychological well-being among cardiac patients. METHOD: Self-report questionnaires were distributed to a convenience sample of 81 cardiac patients to obtain data on personality (TCI [Cloninger CR, Przybeck T, Svrakic D, & Wetzel RD. The Temperament and Character Inventory (TCI): A guide to its development and use. St Louis (MO), Center for Psychobiology of Personality, Washington University;1994]), anxiety and depression (HADS [Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983;67(6): 361-70]) and satisfaction with life [Diener E, Emmons RA, Larsen RJ, Griffin S. The satisfaction with life scale. J Pers Assess 1985;49(1):71-5]. RESULTS: The interaction of two personality dimensions (harm avoidance and self-directedness) was significantly related to measures of psychological well-being. Patients with low self-directedness combined with high harm avoidance reported significantly higher levels of anxiety, depression and lower levels of satisfaction with life. CONCLUSION: This exploratory study suggests that psychobiological theory of personality may be useful for practitioners in cardiac rehabilitation seeking to identify patients at risk of poor psychological well-being.