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Dissertations / Theses on the topic 'Myalgic Encephalomyelitis/Chronic Fatigue Syndrome'
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1
Goudsmit, Ellen Marianne. "The psychological aspects and management of chronic fatigue syndrome." Thesis, Brunel University, 1996. http://bura.brunel.ac.uk/handle/2438/4283.
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Chronic fatigue syndrome (CFS) describes a condition characterised by severe fatigue of at least six months' duration. In this thesis, it is argued that the complexity of CFS with respect to other symptoms, the patients' response to their illness and the determinants of emotional distress, has yet to be fully recognised. This may have narrowed the focus of research and limited the range of treatments available. The first of the three studies investigated CFS from the patients' perspective. The findings challenge some of the generalisations concerning CFS, particularly those relating to the patients' attributions and their choice of coping strategies. They also suggest that the effects of the condition may have been underestimated and that certain influences on emotional distress may have been overlooked. The second study assessed a number of variables thought to be associated with emotional distress and psychological adjustment. The results show that uncertainty and lack of social support were significantly correlated with anxiety and depression while functional impairment was more closely linked to cognitive difficulties and other illness-related measures. The third study evaluated a management programme which acknowledges the complexity of CFS. After six months, significant differences between the treated patients and waiting-list controls were found for a number of variables, including fatigue, somatic symptoms, anxiety and perceived self-efficacy. However, many patients continued to record high levels of emotional distress, showing that the programme was not sufficient to deal with all the problems experienced.
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Lynch, Sean Patrick Jeremy. "The nature of fatigue in the chronic fatigue syndrome : a longitudinal study." Thesis, Imperial College London, 1996. http://hdl.handle.net/10044/1/7496.
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Ramsden, Rebecca Mary. "Narratives of partners of individuals affected by Chronic Fatigue Syndrome/Myalgic Encephalomyelitis." Thesis, University of Hertfordshire, 2016. http://hdl.handle.net/2299/17195.
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Background and Aims: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) remains a poorly understood condition, shrouded in uncertainty and dispute. Research suggests this context to have a profound bearing on those touched by the condition, impacting significantly on their experience and the narratives constructed thereof. However, no studies examining the narratives of partners of individuals affected by CFS/ME appear to have been carried out to date. Based upon this gap in the literature, this study sought to hear the narratives of partners of adults living with CFS/ME, giving particular consideration to the ways in which these narratives were told to an outsider, and how the outsider may have influenced the narrative. Methodology: This study drew on a qualitative approach. A purposive sample of six partners of adults affected by CFS/ME (4 men and 2 women) was recruited. Individual interviews were conducted that were audio-recorded and transcribed. Narrative analysis was used to analyse the transcripts, focusing principally on how participants narrated their accounts, as well as on the content of narratives and the narrative and discursive features that shaped the telling of the accounts. Analysis and Findings: Multiple readings of the narratives identified two areas of collective focus within participants' accounts - 'stories from then' and 'stories from now'. Some similarities in how 'stories from now' were told were seen to emerge down gender lines. Notably participants' storytelling could be seen to represent a form of response to wider narratives that purvey around CFS/ME, with participants' being observed to construct particular meanings around CFS/ME, as well as particular 'identities' of themselves, their partner, their relationship and 'others' who had played a key role in their story of living with the condition. The findings are discussed in terms of their potential bearing for clinical practice and future research endeavours. In addition, the strengths and the limitations of the research are considered.
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Barcroft, Rachel. "Chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia : a social model of disability perspective." Thesis, Lancaster University, 2017. http://eprints.lancs.ac.uk/87165/.
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This thesis is composed firstly of a literature review focusing on the attitudes of health professionals towards chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and fibromyalgia. Secondly, a research paper explores the ways in which people living with CFS/ME have experienced psycho-emotional disablism. Finally, a critical appraisal discusses the process of conducting the research as well as its strengths and limitations. The literature review takes the form of a meta-synthesis regarding the attitudes of healthcare professionals towards CFS/ME and fibromyalgia. A meta-ethnographic approach was used with reciprocal translation producing the following themes: “Feeling hopeless and more hopeless”: psychological effects of lack of knowledge; “Your heart sinks when they come in the room”: stigma and stereotypes; and “I’m going to be with you through thick and thin”: management of the condition. The review highlights the difficulties faced by health professionals regarding the management and diagnosis of both conditions, as well as possible reasons for the negative attitudes held by some professionals. The research paper, which employed thematic analysis, explores the ways in which people living with CFS/ME have experienced psycho-emotional disablism. Three overarching themes were identified: “fighting to be heard”; “lack of legitimacy” and “feeling invisible”. Participants described the discrimination and stigma that they had encountered from many areas of society. Ideas for future research are proposed. The critical appraisal presents the author’s reflections on the research process as well as its strengths and limitations, and the five stages of the process are described as follows: choosing a thesis topic and designing the project; recruitment and research interviews; the interview process; analysis and writing up of the data; and the author’s reflections on the project.
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Payne, Rosalind. "Narratives of parents living with a child affected by chronic fatigue syndrome/myalgic encephalomyelitis." Thesis, University of Hertfordshire, 2017. http://hdl.handle.net/2299/17472.
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Background and Aims: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) remains a poorly understood condition, shrouded by debate, stigma, and uncertainty. Unsurprisingly, the little available research suggests that caring for a Child or Young Person (CYP) affected by the condition can be extremely challenging. While the majority of available literature is quantitative in nature, there is some qualitative research examining the impact of having a CYP with CFS/ME on parents. However, there currently appear to be no studies examining the narratives of parents living with a CYP with CFS/ME. Therefore, this research aimed to hear how parents narrate their experiences of living with a CYP affected by CFS/ME, paying attention to how they construct their identity, and the contested condition. Methodology: This research drew on a qualitative approach that explored the narratives of the participants. A purposive sample of five parents of CYP affected by CFS/ME (5 mothers) was recruited for a single semi-structured interview. The interviews were audio-recorded, transcribed, and analysed using a narrative approach to explore what participants said and how they narrated their accounts. This was then situated within the social and cultural contexts that shaped them. Analysis and Findings: Multiple readings of the narratives allowed me to develop a summary of each individual's narrative account. These were presented, after which similarities and differences across narratives were considered. Analysis identified six areas of collective focus: 'stories of onset and diagnosis', 'stories of battle', 'stories of finding the person/people who can help', 'stories of impact', 'stories of seeking social support', and 'stories of coping and adjustment'. Participants' narratives were heavily influenced by dominant societal discourses surrounding CFS/ME and motherhood, and could be seen as a response to these narratives. Consequently, participants offered particular constructions of the condition, themselves, their CYP, and others that they had come into contact with. These findings are discussed with reference to their potential bearing for clinical practice, strengths and limitations of the methodology, and directions for future research.
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McKay, Pamela Gair. "An exploratory study into the symptoms of chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia." Thesis, University of the West of Scotland, 2017. https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.738487.
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Stalmeisters, Dzintra. "An investigation into the relationship between early maladaptive schemas and myalgic encephalomyelitis/chronic fatigue syndrome." Thesis, University of Derby, 2012. http://hdl.handle.net/10545/312811.
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The aim of the research was to investigate the relationship between early maladaptive schemas, as described by Young, Klosko and Weishaar (2003), and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Despite the recognition of characteristics associated with these schemas in people with ME/CFS by clinicians, a review of the literature suggests that systematic research into this relationship has not previously been conducted. This thesis progresses knowledge in this area by providing a schema-level understanding of ME/CFS and offering insights into the behavioural process involved in the progression from schema to illness. The research employed mixed methods enabling a consideration of the relationship from different perspectives, and is grounded in a critical realist perspective. The quantitative study involved 40 people with ME/CFS and 40 people from a non- clinical population who completed Young's Schema Questionnaire (YSQ-S3), a questionnaire designed to elicit 18 early maladaptive schemas. The schemas Unrelenting Standards and Self-Sacrifice were the most prevalent in both groups. Unrelenting Standards was endorsed by 47.5% of the ME/CFS group and by 25% of the non-clinical group at a level of' clinical caseness', whilst the percentage of people that endorsed the Self-Sacrifice schema was similar in each group; 27.5% of the ME/CFS group endorsed this schema and 25% of the non-clinical group. There were significant correlations between the schemas Unrelenting Standards and Self- Sacrifice; age and the schema Social Isolation; qualifications and the schema Self- Sacrifice also current employment and the schema Unrelenting Standards. The qualitative study, which involved 13 people with ME/CFS, adopted a Grounded Theory approach influenced mainly by the works of Glaser, (1978, 1998, 2011) and Charmaz (1995, 2007). The core category generated from the data was termed 'obscuring', and conceptualised the manner in which early maladaptive schemas and the coping style 'surrender to the schema' obscured the needs of individuals with throughout the therapeutic process. The number of early maladaptive schemas reduced once depression had been treated, whilst the schemas Unrelenting Standards and Self-sacrifice remained at a level of 'clinical caseness' at the end of therapy, although their scores on Young et al. 's Schema Questionnaire (YSQ S-3) had decreased. The qualitative study and case study gave an insight into the complexity of early maladaptive schemas in relation to the illness, giving real life meaning to the quantitative findings and together the three studies increased the credibility of the theory that emerged from the qualitative analysis. Taken together the studies have implications for the Cognitive Behavioural model of ME/CFS (Surawy et al. 1995). It is proposed that early maladaptive schemas have relevance for the model at the predisposing and perpetuating levels; that the theoretical codes 'compelling', 'curtailing' and 'compassionating', derived from the grounded theory analysis, are evident at these levels; and that the model might benefit from the inclusion of the terms 'unhelpful emotional responses' and 'psychological rewards'. The research not only supports clinical observations, but also contributes to cognitive and behavioural theory and therapeutic interventions for ME/CFS, helping to deepen understanding of the role that early maladaptive schemas have in this disabling and unpredictable illness. Recommendations are made for clinical practice and future research.
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Osoba, Tolu. "The development of an epidemiological case definition for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)." Thesis, University of the West of England, Bristol, 2007. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.444489.
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Whitehead, Lisa. "The lived experience of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) : sufferers' and families' perspectives." Thesis, University of Liverpool, 2004. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.406661.
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Williams, Deborah Samantha. "Long-term experiences of managing Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) : a qualitative study." Thesis, University of the West of England, Bristol, 2016. http://eprints.uwe.ac.uk/28310/.
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Background: Frustrations are noted in the management of CFS/ME as it’s a complex and individual condition with no known cure. Despite being a Long-term Condition (LTC) limited research has focused on long-term experiences. This study aims to extend the knowledge of long-term experiences of CFS/ME specifically focusing on management of the condition. Thinking about therapeutic moderators and mechanisms of change, whether management changes throughout the course of the illness and what support people might benefit from. Methods: A qualitative research design, using semi-structured interviews was adopted. Nine participants' were recruited from a specialist CFS/ME Service in the UK who were over 18 years old, had a diagnosis of CFS/ME and reported experiencing fatigue related symptoms for over 5 years. Interviews were audio recorded, transcribed verbatim and analysed using Thematic Analysis. Findings: Three themes; Awareness, Acceptance, Connection and two subthemes; connection with self and connection with others were constructed from the data. An overarching theme of Awareness appeared to facilitate the ability to accept and connect with what was important for people with CFS/ME, enabling people to adapt to living with the condition and achieving a standard of living. Commonalities occurred across all themes of development over time, individuality and ongoing balance or monitoring. Discussion: Findings suggest supporting adults with CFS/ME to become more self-aware of their illness experience and identifying their values will be beneficial at any stage of the illness duration, but particularly important for long-term management. These findings provide further support for tailored treatment plans (NICE, 2007) with some individuals' needing more, or occasional contact with understanding professionals to achieve. The results support the use of acceptance-based interventions in LTC management; specifically Acceptance and Commitment Therapy (ACT) and Focused ACT. Further research into outcomes and experiences of ACT in CFS/ME, and interdisciplinary approaches is advocated.
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Solomons, Wendy. "Narratives of young people living with a diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)." Thesis, University of Hertfordshire, 2016. http://hdl.handle.net/2299/17597.
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CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) is a distressing and potentially debilitating condition. It can also be understood as a contested condition, surrounded by controversy about its nature, causes and treatment. Previous research indicates that those affected experience this climate of contestation as a troubling and discrediting assault, not only on the nature of their condition, but also on their identities. However, little attention has been paid to the voices of young people living with CFS/ME. This thesis extends a relatively small literature in new directions, focusing a constructionist, discursive narrative lens on the accounts of ten young people (aged 13-18) living with a diagnosis of CFS/ME. Narratives constructed during repeated interviews over a year, and drawing on multimodal materials collected by participants over that period, were analysed for their content, structure and performance, with reference to the local and broader contexts of their production. This analysis demonstrates that teenagers construct rich, multi-layered narratives with the potential to enhance understanding of their situation and broader features of the social world. As they speak of the onset of illness, attempts to live with enduring, unpredictable symptoms and their psychosocial consequences, and (for some) the possibility of 'moving on' from the worst of illness, this analysis throws new light on how young people's narratives can be understood as simultaneously constructing the condition ('M.E.') and the identities of those involved ('me' and others), in ways that engage with, reflect and resist prevailing discourses. It is argued that the discursive contexts of CFS/ME and adolescence raise particular challenges for young people as they try to construct credible narratives that convey the full extent of their difficulties, while resisting stigmatising identities (eg, as 'complaining', 'lazy' or otherwise 'not normal'). This analysis highlights implications for them, their families and those who work professionally with them; and for the ongoing social construction of CFS/ME in young people.
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Gyllin, Ann-Charlotte, and Karin Odefjord. "Att vara en åskådare : -Leva med Myalgisk Encefalomyelit/Chronic Fatigue Syndrome." Thesis, Högskolan Väst, Avdelningen för omvårdnad - grundnivå, 2018. http://urn.kb.se/resolve?urn=urn:nbn:se:hv:diva-12655.
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Background Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a neurologic disease. Between 0,1-2,6% of the world’s population is estimated to have ME/CFS. Even though a lot of people are affected there is a lack of knowledge about the disease. Its symptomatology affects the whole body and is severely debilitating. It’s at utmost importance that this subject is studied so that nurses can get an increased knowledge about ME/CFS. Aim The aim was to highlight people's experiences of living with ME/CFS. Method A literature-based study based on analysis of ten qualitative scientific studies was performed. Results Four main themes and fourteen subthemes were revealed. The main themes were about changing living conditions, lack of knowledge, changes in the body and existential changes. Changes were a major part of the result and people with ME / CFS experienced that the changes could be both positive and negative. The results showed that there is a knowledge gap regarding ME / CFS, which has serious consequences for people with the diagnosis. Conclusion The conclusion of the study was that knowledge, information and support is important for people with ME / CFS. By working person-centered, the nurse can help people with ME / CFS feel better.
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Gillings, Kirsty Louise. "The role of cognitive, emotional and behavioural factors in chronic fatigue and chronic fatigue syndrome/myalgic encephalomyelitis : content, process and therapeutic outcome." Thesis, University of Birmingham, 2007. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.486634.
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This thesis is presented in two volumes. In Volume I, the effectiveness of cognitive-behavioural therapy and graded exercise therapy in the management of chronic fatigue are reviewed. The impact of these treatments compared to no treatment and other active therapy is assessed using meta-analytic techniques. The findings indicate that both cognitive-behavioural therapy and graded exercise therapy are effective in reducing fatigue and increasing physical functioning in the short term. Neither approach significantly improved mood disturbance. The findings are discussed with reference to treatment models for chronic fatigue and future research directions are identified. The second paper in Volume I presents an empirical study examining information processing in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Individuals with CFS/ME, rheumatoid arthritis and healthy controls completed measures of core schema and current mood, in addition to an emotional Stroop task and facial affect recognition task. Stronger core schema were reported by the CFS/ME group. The illness groups both displayed systematic biases in their processing of emotional information. The findings are interpreted with reference to cognitive models of CFS/ME. Volume II contains five individual clinical practice reports completed during Forensic, Child, Older Adult and Learning Disability placements respectively.
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Stråhle, Helena. "Autoimmuna aspekter i Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome : En litteraturstudie rörande indikationer på autoimmunitet i ME/CFS." Thesis, Linnéuniversitetet, Institutionen för kemi och biomedicin (KOB), 2020. http://urn.kb.se/resolve?urn=urn:nbn:se:lnu:diva-96736.
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Bakgrund: Myalgic Encephalomyelitis eller Chronic Fatigue Syndrome (ME/CFS) omfattar ett spektrum av olika symptom som bland annat påverkar de autonoma och neurologiska systemen, kognitiv funktion och ger immunologiska störningar med mera. De karakteristiska symptomen är oförklarlig kronisk trötthet, ansträngningsutlöst fysisk och mental uttröttbarhet Post Exertional Malaise (PEM). Trots forskning inom ett flertal områden är den underliggande molekylära orsaken bakom ME/CFS inte fastställd. Flertalet hypoteser om sjukdomsorsaken finns, varav en är att ME/CFS är en autoimmun sjukdom. Syfte: Syftet med litteraturstudien är att undersöka huruvida det finns autoimmuna aspekter i ME/CFS. Metod: Systematisk litteraturstudie utifrån vetenskapliga artiklar, publicerade 2010—2020 i databasen PubMed. Resultat: Studieresultaten är inte helt entydiga när det kommer till att påvisa autoimmuna aspekter i ME/CFS. Antikroppsstudier riktade mot neuronalt protein hos ME/CFS-patienter och behandlingar riktade mot antikroppar, immunoadsorption och rituximab, gav negativa resultat. Däremot observeras HSP60 (heat shock protein 60) antikroppar för specifika korsreaktiva epitoper i en undergrupp av ME/CFS-patienter, vilket stämmer överens med infektionsutlöst autoimmunitet. Även i de två genstudierna, HLA-association (human leucocyte antigen) och SNP (single nucleotide polymorphism) genotypning i immungener, observeras karakteristiska riskgener för autoimmun sjukdom, tydligast resultat observerades hos de patienter som har en infektionsutlöst ME/CFS. Slutsats: Trots delvis negativa resultat ges visst stöd för hypotesen då dessa indikerar autoimmuna aspekter i en undergrupp av infektionsutlöst ME/CFS.Background: Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) is a debilitating disease which is characterized by unexplained and persistent post exertional fatigue (PEM) and a myriad of symptoms related to neurological disturbance, immunological, cognitive and autonomous dysfunction. Despite biomedical research from a disparate field of expertise the pathogenesis and etiology of ME/CFS is not well-understood. Several hypotheses regarding the pathogenesis have been proposed one of which is that ME/CFS is an autoimmune disease. Aim: The purpose of the literature study is to investigate whether there are autoimmune aspects in ME/CFS. Method: A systematic literature study based on scientific articles, published 2010-2020 in the PubMed database. Results: The study results are not entirely consistent when it comes to detecting autoimmune aspects in ME/CFS. Antibody studies targeting neuronal proteins in ME/CFS-patients and antibody treatments, immunoadsorption, and rituximab yielded negative results. In contrast, HSP60 (heat shock protein 60) antibodies for specific cross-reactive epitopes are observed in a subset of ME/CFS patients, which corresponds to infection-triggered autoimmunity. The two gene studies, HLA (human leucocyte antigen) association and genotyping of SNP (single nucleotide polymorphism) in immune genes, observed characteristic risk genes for autoimmune disease. Significant results were observed in ME/CFS- patients with an infection-triggered onset. Conclusion: Despite partially negative results, some support exists for the hypothesis as results indicate autoimmune aspects in ME/CFS with an infection-triggered onset.
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Parslow, Roxanne Morin. "Developing a patient reported outcome measure (PROM) for children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)." Thesis, University of Bristol, 2016. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.715797.
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Kennedy, Alice Catriona. "Exploring the online social identities of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) : a discourse analysis approach." Thesis, University of Exeter, 2014. http://hdl.handle.net/10871/16296.
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People with CFS/ME suffer from physical symptoms and restriction in roles. Having a contested condition means facing scepticism, stigma and disbelief. Previous researcher-mediated studies found that people with CFS/ME excluded psychological explanations, to ward off negative stereotypes and to position themselves as genuinely ill. In this study I used social identity theory and discourse analysis methods to explore the identities exhibited by people with CFS/ME on an online forum. This study confirmed previous findings, namely that posters experienced biographical disruption owing to symptom severity and loss of roles and relationships. It also found that posters re-asserted limited self-efficacy to renegotiate their roles, to persuade family, friends and doctors that they were seriously ill and to position themselves as experts in CFS/ME. This raised the social status of the ingroup, people with CFS/ME. A new finding was that some posters considered psychological factors as exacerbating or causing CFS/ME.
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Gilmour, Robert John. "Qualitative study of individuals' experience of interpersonal relationships before and after the onset of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)." Thesis, University of Leeds, 2009. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.496128.
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Murray, Rebecca E. "A life lived differently : an exploration of how living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) impacts upon people's identity." Thesis, University of Huddersfield, 2016. http://eprints.hud.ac.uk/id/eprint/31500/.
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Existing literature provides an insight into CFS/ME, but it is fractured, in that it does little to serve understanding, empathy or coping. Moreover the experiences of people with CFS/ME are under theorised. The literature demonstrates that issues of identity appear central to the lived experience of chronic illness, yet the mechanisms underpinning identity are not fully explored. Consequently there is little understanding of the crisis of identity in CFS/ME. Therefore, the aims and objectives of the current research endeavoured to examine identity within the context of the lived experience of CFS/ME. Drawing upon Wenger’s (1998) ‘Communities of Practice’ theory (CoP), the current research aimed to make transparent the mechanism of identity by exploring the lived experience of identity in chronic illness; specifically CFS/ME. It is argued throughout, that a millennia of meaning underpins the crisis of identity in CFS/ME and that CoP, whilst predominantly a social theory of learning, was re-conceptualised here to illuminate the crisis of identity in chronic illness. Data were gathered via a closed Facebook group; cfsid, which was created for the purpose of the current research. Participants (n. 37) contributed over time and in depth and in so doing revealed the complex foundation of their shifting identities. The data was analysed using a theoretical thematic analysis (Braun and Clarke, 2006). Aligned with CoP, the key findings indicate that the mechanism underpinning the crisis of identity in CFS/ME is the changing nature of participation. The history of CFS/ME is one defined by scepticism and as such the controversy surrounding CFS/ME interacted with the lived experience of the illness for participants. The lived experience of CFS/ME for participants was reliably defined by their inability to participate in either life or self. Lives and selves were unrecognisable, but all was not lost as acceptance and adjustment allowed participants to negotiate ways in which they could participate despite their CFS/ME. Participants’ experiences of participation emerged within the analysis as a journey to finding a new way to be in the world. On looking to the future, if people with CFS/ME are to be better supported and enabled within their lived experience of chronic illness, the burdening history of CFS/ME needs to be replaced by legitimacy, and the importance of the negotiation of participation in chronic illness needs to be illuminated further.
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Johnson, Anne. "Exploring the experiences and occupations of men with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) using a Gadamerian interpretive phenomenological framework." Thesis, University of the West of England, Bristol, 2017. http://eprints.uwe.ac.uk/29916/.
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Background: Chronic fatigue syndrome (CFS) known interchangeably as myalgic encephalomyelitis or encephalomyelopathy (ME) is a contentious and often misunderstood condition of unknown cause. Associated symptoms may fluctuate and include post exertional mental and physical fatigue, sleep disturbance, generalised aches and pains and for some, hypersensitivities to alcohol, light and noise. The impact of having CFS/ME can result in disruption to all aspects of day to day life for children and adults regardless of ethnicity or socioeconomic factors. In adults, it is estimated that population prevalence is 0.2 – 0.4% which is higher than in children and that women are affected by the condition more than men by a ratio of 3:1. The vast majority of the literature linked to living with CFS/ME focuses on the experiences of women with the condition and as a consequence, there is a dearth of literature reporting on the experiences of men. Additionally, men with CFS/ME are considered as difficult to recruit in terms of research participation. Objective: The focus of this study was to explore the experiences of men living with CFS/ME and its impact on their day to day lives and occupations. Design: A qualitative design was employed underpinned by interpretive phenomenology. Eight men aged between 21 and 68 years old were recruited with a clinically confirmed diagnosis of CFS/ME and interviewed up to four times. Rich data were generated through dialogue, poetry and artworks. Interpretations were made using the hermeneutic work of Gadamer (2004) as a philosophical framework. Analysis: Thematic analysis was employed. Unique and shared experiences were identified from the data. Shared findings were synthesised into three themes to reflect the temporally situated nature of the men’s experiences. Findings: The findings illustrate that existentialist notions of ‘being-in-the-world’ were significantly disrupted by the presence of CFS/ME. Additionally, the occupational dimension of ‘being-in-the-world’ referred to as ‘doing’ and notions of ‘belonging’ and ‘becoming’ were also disrupted. How CFS/ME impacted upon individual risks to survival and health was also elicited. Conclusions: New knowledge was generated to add to the body of work linked to the impact of CFS/ME on the lives and occupations of men with the condition. A unique way of knowing about the meaning of occupation was also gained through fusing philosophical and occupational orientations/frameworks to inform occupational therapy practice and the occupational science literature. The importance of considering the men’s ‘being-in-the-world’ was emphasised in order to understand their ‘doing’ as a dimension of ’being’ and their subsequent ‘belonging’ and ‘becoming’. Uniquely, notions of ‘traumatised being’, associated with potentially life threatening causes of fatigue, and ‘emasculated being’ were experienced by some of the men and the importance of an awareness of these concepts is addressed in terms of occupational therapists facilitating survival, well-being and ‘harmonious health’ for men with CFS/ME.
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Travers, Michele Kerry. "From Violation to Reconstruction: The Process of Self-Renewal Associated with Chronic Fatigue Syndrome." University of Sydney. Clinical Nursing, 2004. http://hdl.handle.net/2123/636.
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Chronic Fatigue Syndrome (CFS) is a contested condition that generates scepticism and occupies a marginalised position within medical and social contexts. The thesis examines the illness experiences, and specifically the experiences of self, for people affected with CFS. Using qualitative inquiry, a substantive theory related to the process of self-renewal and adaptation associated with CFS is explicated. The theory encompasses the trajectory of CFS from onset to chronicity, and in exceptional instances, recovery. Illness narratives were derived from in-depth, semi-structured interviews of 19 adults, including 16 people affected with, and 3 people recovered from, CFS. Data was coded and analysed using a grounded theory approach. Analysis generated two parallel narratives that defined the illness experience of CFS: the narrative of the illness biographies and the narrative of self, specifically the struggling and diminished self seeking renewal. The illness biographies encompassed the stories of symptoms and their explanations, the encounters that ensued and their contentious milieu. The narrative of self was the primary narrative. It articulated the negative consequences to self and personhood associated with CFS, named the Violation of Self, and the consequent efforts of participants to decrease the struggle and violation by use of the Guardian Response and the Reconstructing Response. The Guardian Response provided protection and self-reclamation. The Reconstructing Response fostered self-renewal and meaning. The two narratives were bridged by the threats of CFS. That is, the illness biographies were accompanied by threats of disruption related to chronic illness, and by threats of invalidation that arose from CFS as a contested condition. In turn, these threats provided the catalyst to the violation and responses as described in the narrative of self. Under different conditions the relative strengths of violation, guardianship or reconstruction fluctuated, and it was these fluctuations that presented the participants with the ongoing struggle of CFS.
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Nylund, Annika. "De måste åtminstone tro oss : En enkätstudie om hur personer med ME/CFS blir bemötta i primärvården." Thesis, Röda Korsets Högskola, 2017. http://urn.kb.se/resolve?urn=urn:nbn:se:rkh:diva-2528.
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Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a complex disease with unknown cause. It affects about 0.4 percent of the population. It is a chronic disease that manifests itself in an impairment fatigue that is impaired by physical exertion. Purpose: The purpose of the study was to illustrate how people diagnosed with ME/CFS experience the primary care treatment. Method: An empirical questionnaire with mixed method was used. Most questionnaires were quantitative, and one question was qualitative. Result: ME patients may wait several years and meet several doctors before they get their diagnosis. The result showed that most respondents felt that they did not receive good treatment in primary care. Conclusion: People with ME/CFS want to be treated with respect and want primary care to listen and take them seriously. In a partnership between the primary care and healthcare personnel, they could meet more equally, and the ME sufferers would not have to wait several years to meet several doctors before receiving the assistance and support they need in their illness. Clinical significance: New research on how healthcare professionals can help people with ME/CFS is needed. Research would also be needed on how the role of nurse could be extended to be a key part of primary care for people with ME/CFS.
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Maher-Edwards, Lorraine. "The development of a questionnaire to assess metacognition in chronic fatigue syndrome/myalgic encephalomyelitis : the metacognitive beliefs in CFS/ME questionnaire (MB-CFQ)." Thesis, University of East London, 2010. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.533038.
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Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is characterised by persistent unexplained fatigue resulting in severe impairment in daily functioning. CFS-like illnesses have been reported as early as the 19`h century. The lack of a recognisable, organic cause has lead to the illness and diagnosis being steeped in controversy, with researchers and patients disagreeing on the name given to the illness, the absence of pathophysiology, the contribution of psychological/emotional factors and the effectiveness of treatments such as cognitive behaviour therapy (CBT). Despite this debate, CBT has been the most researched treatment, with an evidence base that has shown that CBT improves fatigue in some patients. However, the current CBT treatment has some weaknesses and a significant proportion of patients do not respond. One such weakness is that the current CBT treatment model may not sufficiently address rumination and attention which have been identified as potentially important features of CFS/ME. Little is known about the factors that might drive the use of these strategies and how they might relate to the various facets of the illness. It has been shown that perseverative thinking strategies, such as rumination and attentional hypervigilence, in anxiety and depression can be influenced by metacognitive beliefs (beliefs an individual holds about their thinking). It may therefore be of interest to investigate this in CFS/ME. The main aim of the research was to generate preliminary evidence that metacognitive beliefs play a role in CFS/ME. The role of rumination and attention were explored by looking at the metacognitive strategies that people with CFS/ME use and the metacognitive beliefs they hold about such strategies. The research was a mixed methods design and consisted of a series of studies concerned with the development and validation of a questionnaire to measure metacognitive beliefs in CFS/ME (MB-CFQ): 1) a thematic analysis was conducted on transcripts from 10 semi-structured interviews with CFS/ME patients; 2) the results of the thematic analysis were used to design a questionnaire which was piloted in 104 CFS/ME patients and a principal components analysis was conducted; and. 3) a correlation analysis was conducted to provide some preliminary validation. The MB-CFQ showed high internal consistency and preliminary evidence of concurrent and construct validity. The questionnaire was used to investigate relationships between fatigue, metacognition and low mood. The data showed that, in CFS/ME, holding positive and negative metacognitive beliefs about the use of perseverative thinking strategies, including worry, rumination, and body monitoring (negative beliefs only), related positively to levels of fatigue (in particular mental fatigue), depression, stress, and anxiety. The results of this exploratory study now require further research to disentangle this observed relationship between metacognition, fatigue and mood.
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Arnell, Erika, and Lena Höjskeld. "Diagnosen få känner till : Erfarenheter av Myalgisk encefalomyelit/kroniskt trötthetssyndrom." Thesis, Högskolan i Halmstad, Akademin för hälsa och välfärd, 2017. http://urn.kb.se/resolve?urn=urn:nbn:se:hh:diva-33801.
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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) är en komplex sjukdom av okänd etologi. ME/CFS syns inte på utsidan men leder till funktionsnedsättning i varierande grad. Okunskapen om sjukdomen är stor vilket leder till att många får diagnos i ett sent skede eller en felaktig diagnos. ME/CFS innebär en etisk utmaning för forskningen, samhället och inte minst för sjukvården, då evidens för både omvårdnad och behandling fortfarande saknas. Syftet var att undersöka personers erfarenheter av att leva med ME/CFS. I databearbetningen framkom tre kategorier: möte med vården, påverkan på vardagen samt anpassning till livssituationen. I resultatet påvisas erfarenheter från personer med ME/CFS och hur de upplever bemötandet med vården och den okunskap som råder. Det framkommer att sjukdomen påverkar identitet, relationer och aktivitetsförmåga. Resultatet visar även hur livet förändras samt vilka strategier som krävs för att hantera vardagen när förutsättningarna i livet förändras. För att möta omvårdnadsbehovet hos personer med ME/CFS krävs mer forskning och utbildning för vårdpersonal.Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex disease of unknown etiology. Although ME/CFS is not visible on the outside, it leads to disability in varying degrees. There is a lack of knowledge regarding the disease, which often leads to a delayed or incorrect diagnosis. ME/CFS represents an ethical challenge for research, society and especially for healthcare professionals since no evidence-based nursing or treatment are available. The aim was to investigate people’s experiences with ME/CFS. Three categories emerged in the data analysis: meeting with the health care, impact on daily life and adaption to the new life situation. The result shows experiences of people with ME/CFS and how they feel they are treated by the healthcare system and the lack of knowledge that exists. It appears that the disease affects identity, relationships and abilities in physical activity. The result also shows how life changes and what strategies are required to manage everyday life when the conditions in life change. To meet the nursing needs of people with ME/CFS, more research on the subject, as well as education for healthcare professionals, are necessary.
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Komulainen, Heidi, and Ulrika Sandström. "Kroniskt trötthetssyndrom : en diskursanalys av artiklar 1989-2006." Thesis, Stockholm University, Department of Social Work, 2006. http://urn.kb.se/resolve?urn=urn:nbn:se:su:diva-6752.
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The purpose with this work is to describe the language that is built around the chronic fatigue syndrome (CFS) in Sweden. Our questions are: What does the professional field look like; who writes, about what and for which kind of readers? How do they describe the expressions and the upcoming of CFS? For which reasons can CFS be considered as a medical diagnosis/illness? How can CFS be understood from a social perspective? Our theoretical starting point is a social constructive theory and also Karin Johannisson's theory about medicalization and Foucault’s theory about power. We have from a literature-exposition of Swedish articles from 1989 to 2006, done a social constructive discourse analysis with help from Laclau & Mouffe's discourse theory, and Fairclough's model of social practices. In our textual analysis we found three dominating discourses: A medical discourse, a social/cultural discourse and a general/popular discourse. Our results showed that the dominating professional category is doctors and those who have medical direction within their work. In most cases they wrote articles that searched for medical explanations of CFS and their common factor was that they looked at CFS as an illness. The articles that had a social constructive, anthropological, idea historical or religious perspective to CFS was in a minority and they often defined the phenomenon as an expression of different kind of public elements and were often critical to medicalization.
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Andersson, Daniel, and Emma Hellmark. "Arbetsterapeutens roll för personer med diagnosen myalgisk encefalomyelit/kroniskt trötthetssyndrom : En litteraturöversikt." Thesis, Luleå tekniska universitet, Institutionen för hälsovetenskap, 2020. http://urn.kb.se/resolve?urn=urn:nbn:se:ltu:diva-79099.
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Bakgrund: ME/CFS är en allvarlig, kronisk och komplex multisystemsjukdom som ofta och dramatiskt begränsar de drabbade personernas aktivitet. De vetenskapliga beläggen gällande effekten av interventioner riktade mot funktion och funktionsnedsättning är begränsade. Nuvarande kunskapsläge indikerar att arbetsterapeuten kan bidra i vården av personer med ME/CFS, men behov av vidare forskning finns. Syfte: Att med denna litteraturöversikt kartlägga och beskriva aktuell forskning gällande arbetsterapeutens roll för personer med diagnosen ME/CFS. Metod: Datainsamling för litteraturöversikten genomfördes baserat på utarbetade urvalskriterier i tre relevanta databaser; PubMed, CINAHL och PsycINFO och resulterade i tio artiklar, sju kvantitativa och tre kvalitativa studier. Studiernas kvalitet granskades och sedan utfördes en latent innehållsanalys. Resultat: Analysen resulterade i fyra kategorier: Att ge klientcentrerat stöd för strategier i aktivitet, Att justera terapeutiskt förhållningssätt vid aktivitetsanpassning, Att beakta gruppbehandlingens terapeutiska värde samt Att bidra till professionernas teamsamverkan. Slutsats: Arbetsterapeutens kompetens är ett viktigt bidrag i rehabiliteringen på grund av den komplexa aktivitetssituation som diagnosen innebär.Background: ME/CFS is a serious, chronic and complex systemic disease which often and dramatically limits the activity of the affected. The existing scientific evidence of interventions regarding function and disability is limited. The current level of knowledge indicates that the occupational therapist can contribute to the care for people with ME/CFS, but there is a need for further research. Aim: The aim of this literature overview was to map out and describe current research regarding the role of the occupational therapist for people diagnosed with ME/CFS. Method: Data collection for the literature overview was conducted based on developed selection criterias in three relevant databases; PubMed, CINAHL and PsycINFO which resulted in ten articles, seven quantitative and three qualitative studies. The quality of the included studies were assessed and finally a latent content analysis was completed which resulted in four categories. Result: The content analysis resulted in four categories: to supply a client centered support for strategies in activity, to adjust therapeutic approach in occupational adaptation, to consider the therapeutic value of the group treatment, and to contribute to the professional team collaboration. Conclusion: The expertise of the occupational therapist is an important contribution to rehabilitation due to the complex occupational situation for people diagnosed with ME/CFS.
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Turner, Laura. "A systematic review of cognitive behavioural therapy (CBT) for the management and treatment of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and Cognitive Behavioural Therapy (CBT) for CFS/ME : an interpretative phenomenological analysis." Thesis, University of Sheffield, 2014. http://etheses.whiterose.ac.uk/6931/.
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Morris, Dorothy, and mikewood@deakin edu au. "Double disability: Lived experience of Australian Tertiary Students with ME/CFS." Deakin University, 2003. http://tux.lib.deakin.edu.au./adt-VDU/public/adt-VDU20051110.110308.
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This research is the exploration of the lived experience of tertiary students in Australia with the medical condition usually known as ME/CFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome) seeking to explore issues of equity and human rights from the perspective of the Disability Discrimination Act 1992. Students feel that their difficulties are not caused just by the illness itself but by the failure of the tertiary institutions to understand the effects of this illness on them, the student, especially within the areas of accommodations and assessments. Their lived experiences are studied to ascertain if their experiences differ from those of other tertiary students. Forty participants came from every state and territory of Australia and twenty -four of Australia's universities as well as eight Technical and Further Education/Open Training Education Network (TAFE/OTEN) colleges are represented. The selection of the chosen methodology, Critical Ethnography from a Habermasian perspective, has been circumscribed by the medical condition which placed limitations on methodology and also data gathering methods. Non-structured stories, in which the participants wrote of their lived experience as students, were considered the most appropriate source of data. These were transmitted by electronic mail (with some by postal mail) to the researcher. A short questionnaire provided a participant background to the stories and was also collated for a composite overview of the participants. The stories are analysed in a number of ways: six selected stories are retold and the issues arising from these stories have been weighed against the remainder of the stories. Four intertwined themes were constructed from the issues raised in each story. Apparent infringements of the Disability Discrimination Act (1992) which impact on quality of life, human rights and equity are found. No accommodations are being made by the academic institutions for the cognitive dysfunctions and learning difficulties. Students are stigmatised and lack credibility to negotiate appropriate academic accommodations. A possible means of improving the ability of students to negotiate appropriate accommodations is explored. Finally the researcher reflects on her own involvement in the research as an 'insider' researcher.
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McLoughlin, Pamela Ann. "Have you been walking? : a search for rehabilitation /." View thesis, 1994. http://library.uws.edu.au/adt-NUWS/public/adt-NUWS20030821.162241/index.html.
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Thesis (Master of Science (Hons.) Social Ecology) -- University of Western Sydney, Hawkesbury, 1994."A dissertation submitted in fulfilment of the requirements for the degree of Master of Science (Honours) in Social Ecology in the University of Western Sydney - Hawkesbury" Bibliography : leaves 288-300.
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Dardani, Vedije, Sara Lindgren, and Evelina Svensson. ""Vad jag än gör så kostar det..." : Upplevelsen och erfarenheten av ansträngningsutlöst försämring hos personer med Myalgisk Encefalomyelit/Kroniskt Trötthetssyndrom: En empirisk studie baserad på bloggar." Thesis, Jönköping University, HHJ, Avd. för omvårdnad, 2021. http://urn.kb.se/resolve?urn=urn:nbn:se:hj:diva-51587.
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Inledning: Myalgisk encefalomyelit/kroniskt trötthetssyndrom (ME/CFS) kännetecknas som en inflammation i hjärna och ryggmärg och karakteriseras framför allt av ihållande utmattning. Sjukdomen är ingen kultursjukdom eller lokal företeelse utan den förekommer i diverse åldrar, länder och sociala grupper. Ansträngningsutlöst försämring (PEM) är ett kardinalsymtom för sjukdomen. PEM kännetecknas av en förvärring av symtom efter rörelse, ortostatisk eller neuromuskulär stress och/eller kognitiv aktivitet. Syfte: Syftet var att beskriva upplevelsen och erfarenheten av ansträngningsutlöst försämring (PEM) hos personer med ME/CFS. Metod: En kvalitativ empirisk studie baserad på bloggar med deduktiv ansats. Livsvärldsteorin användes som en teoretisk referensram. Resultat: Resultatet visade att personer med ME/CFS beskrev PEM som en påfrestande och dramatisk upplevelse och att det krävdes ständiga anpassningar för att undvika försämringen. Situationen förvärrades ytterligare av ett bristfälligt och empatilöst bemötande inom sjukvården. Slutsats: På grund av känslighet för stimuli behöver varje handling gentemot personer med diagnosen ME/CFS reflekteras över huruvida den är till nytta eller till skada. För att förhindra PEM måste vården anpassas utifrån individuella ansträngningströsklar hos varje enskild person. Vidare forskning behövs om vilka förändringar som krävs för att säkerställa högkvalitativ omvårdnad.Introduction: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is characterized as inflammation of the brain and spinal cord and is characterized above all by persistent fatigue. The disease ME/CFS is not a cultural disease or a local phenomenon and It occurs in various ages, countries and social groups. PEM is characterized by an exacerbation of symptoms after movement, orthostatic or neuromuscular stress and / or cognitive activity. Purpose: The aim of this study was to describe the experiences and the perceptions of post-exertional malaise (PEM) in people with ME/CFS. Method: The study was a qualitative empirical study with a deductive approach based on blogs. Lifeworld was used as a theoretical framework. Result: The results showed that people with ME / CFS described PEM as a stressful and dramatic experience and that constant adjustments were required to avoid this deterioration. The situation was further aggravated by a deficient and unempathetic response in healthcare. Conclusion: Due to abnormal sensitivity to stimuli, each intervention for persons diagnosed with ME / CFS needs to be reflected on whether it is beneficial or harmful. To prevent PEM, healthcare must be adjusted based on the individual effort thresholds of each person. Further research is needed on what improvements are required to ensure high-quality nursing.
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Lundblad, Anette, and Minna Kantola. "Arbetsterapeutiska interventioner för vuxna med ME/CFS och betydelsen för aktivitetsbalans : En litteraturöversikt." Thesis, Luleå tekniska universitet, Hälsa och rehabilitering, 2020. http://urn.kb.se/resolve?urn=urn:nbn:se:ltu:diva-79451.
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Syfte: Att beskriva och kartlägga arbetsterapeutiska interventioner för vuxna med ME/CFS och betydelsen för aktivitetsbalans. Metod: För att besvara syftet så utfördes en litteraturöversikt som inkluderar kvalitativa studier, kvantitativa studier och litteraturstudier, totalt åtta studier. Resultat: Arbetsterapeutiska interventioner har många fördelar som visar att arbetsterapi som används i rehabilitering har betydelse för vuxna med ME/CFS i det dagliga livet på olika sätt. Att aktiviteter skulle delas upp i relation till klientens aktivitetsnivåer och energinivåer synliggjordes. Individuell intervention som Pacing strategier och Gruppintervention som Gruppbaserad self-managementprogram kan användas som arbetsterapeutiska verktyg för diagnosgruppen ME/CFS och har betydelse för aktivitetsbalans. Det framkommer att kortsiktiga individuella interventioner kan vara kan vara effektiva och att Gruppbaserad self-managementprogram visar inga långvariga effekter. Slutsats: Uppsatsen visar fördelar att tillämpa Pacing som copingstrategi inom arbetsterapi för klienter med ME/CFS. Pacing strategier kan vara ett betydelsefullt arbetsterapeutiskt verktyg eftersom klienterna behöver strategier till att bespara sina energinivåer för meningsfulla aktiviteter. Pacing strategier visar ge goda effekter och beskrivs vara den säkraste intervention för klienter med ME/CFS. Pacing möjliggör för klienterna att uppnå aktivitetsbalans i vardagen. Arbetsterapeutisk gruppintervention som Gruppbaserad self-managementprogram kan vara en del av den arbetsterapeutiska rehabiliteringen av klienter med ME/CFS. Gruppbaserade self-managementprogram är funktionellt inom primärvården, vilket uppskattades av klienterna eftersom det möjliggör klientträffar med andra med samma diagnos. Genom gruppinterventionen har klienterna lärt sig att använda Copingstrategier och arbeta med sin acceptans. Gruppinterventionen resulterade att klienter lärde sig att undvika överansträngning, lärde sig att förändra levnadsvanor, energibesparing vilket kan stödja klienterna. Resultatet visar att efter genomförd gruppintervention är det betydelsefullt för klienter att hålla kontakten och skapa nätverk mellan klienterna. Arbetsterapi och arbetsterapeuten har betydelse för rehabiliteringen av klienter med ME/CFS och för deras aktivitetsbalans i dagliga livet. Det är viktigt att ta hänsyn till klientens uppfattningar, värderingar och synpunkter i relation till klientens diagnos. Ett dåligt bemötande och omhändertagande i hälso-och sjukvården kan påverka rehabiliteringen negativt. Det är betydelsefullt att arbetsterapeuten respekterar och har kunskapen om diagnosens pendlande symtom i samband med rehabiliteringsinsatser och interventioner. Det finns ett behov och efterfrågan om vidare forskning inom området, eftersom det är ett begränsat område gällande arbetsterapi och arbetsterapeutens betydelse i rehabilitering för klienter med ME/CFS som kan främja aktivitetsbalans.
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Procter, Charlotte Anne. "The post-viral fatigue syndrome." Thesis, Durham University, 1990. http://etheses.dur.ac.uk/6221/.
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Post-viral fatigue syndrome (myalgic encephalomyelitis) is a physically debilitating disorder associated with chronic disabling fatigue. This thesis presents two studies which look at the impact of illness from a personal-psychological and from a family perspective. The first investigates the psychological features of the syndrome. The prevalence of psychiatric disorder in 20 patients with the PVFS was determined. Sixty percent satisfied criteria for a current psychiatric disorder. Diagnoses were of neurotic depression and other neuroses. Only 25 % of a comparatively disabled group of 20 arthritis sufferers received similar diagnoses. Diagnoses did not substantially differ in type from a group of 20 subjects with major depressive disorders, although selected differences in symptom profile and the role of previous life-time psychiatric episodes, suggest that the PVFS cannot be regarded as a variant form of depressive disorder. A logistic regression analysis achieved a satisfactory separation of the two disorders on the basis of psychiatric symptoms. The second study investigates 9 school-aged children with mothers suffering from the syndrome, and 9 children with healthy parents. The children in the PVFS group had been exposed to their mother's illness from between 18 months and 14 years. They were found to have significantly more problems in the school environment in comparison to controls, rated as more shy and anxious, less assertive and with more relationship problems with peers. General family orientation was less active with fewer out-of-home family pursuits. Family interactions were somewhat more negative. Child adjustment is discussed in terms of the linkages between family, school and peer-group in the lives of these children. Investigations into the adaptive potential of such linkages and the permeability of the boundaries between the spheres raise important questions for ameliorative work in the counselling of PVFS sufferers and their families.
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Hart, M. J. Alexandra. "Action in Chronic Fatigue Syndrome: an Enactive Psycho-phenomenological and Semiotic Analysis of Thirty New Zealand Women's Experiences of Suffering and Recovery." Thesis, University of Canterbury. Social and Political Sciences, 2010. http://hdl.handle.net/10092/5294.
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This research into Chronic Fatigue Syndrome (CFS) presents the results of 60 first-person psycho-phenomenological interviews with 30 New Zealand women. The participants were recruited from the Canterbury and Wellington regions, 10 had recovered. Taking a non-dual, non-reductive embodied approach, the phenomenological data was analysed semiotically, using a graph-theoretical cluster analysis to elucidate the large number of resulting categories, and interpreted through the enactive approach to cognitive science.
The initial result of the analysis is a comprehensive exploration of the experience of CFS which develops subject-specific categories of experience and explores the relation of the illness to universal categories of experience, including self, ‘energy’, action, and being-able-to-do.
Transformations of the self surrounding being-able-to-do and not-being-able-to-do were shown to elucidate the illness process.
It is proposed that the concept ‘energy’ in the participants’ discourse is equivalent to the Mahayana Buddhist concept of ‘contact’. This characterises CFS as a breakdown of contact. Narrative content from the recovered interviewees reflects a reestablishment of contact.
The hypothesis that CFS is a disorder of action is investigated in detail.
A general model for the phenomenology and functional architecture of action is proposed. This model is a recursive loop involving felt meaning, contact, action, and perception and appears to be phenomenologically supported.
It is proposed that the CFS illness process is a dynamical decompensation of the subject’s action loop caused by a breakdown in the process of contact.
On this basis, a new interpretation of neurological findings in relation to CFS becomes possible. A neurological phenomenon that correlates with the illness and involves a brain region that has a similar structure to the action model’s recursive loop is identified in previous research results and compared with the action model and the results of this research. This correspondence may identify the brain regions involved in the illness process, which may provide an objective diagnostic test for the condition and approaches to treatment.
The implications of this model for cognitive science and CFS should be investigated through neurophenomenological research since the model stands to shed considerable light on the nature of consciousness, contact and agency.
Phenomenologically based treatments are proposed, along with suggestions for future research on CFS. The research may clarify the diagnostic criteria for CFS and guide management and treatment programmes, particularly multidimensional and interdisciplinary approaches.
Category theory is proposed as a foundation for a mathematisation of phenomenology.
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LUPO, GIUSEPPE FRANCESCO DAMIANO. "RUOLO POTENZIALE DEL MICROBIOMA NELLA SINDROME DA AFFATICAMENTO CRONICO/ ENCEFALOMIELITE MIALGICA (CFS/ME)." Doctoral thesis, Università Cattolica del Sacro Cuore, 2020. http://hdl.handle.net/10280/72840.
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La Sindrome da Affaticamento Cronico/Encefalomielite Mialgica (CFS/ME), è una grave malattia multisistemica caratterizzata da anomalie immunologiche e disfunzioni del metabolismo energetico.
Recenti evidenze suggeriscono l’esistenza di una forte correlazione tra disbiosi e condizione patologica. La presente ricerca ha analizzato la composizione del microbiota intestinale ed orale in pazienti con CFS/ME rispetto a controlli sani e ha determinato se eventuali differenze osservate potrebbero essere utili in futuro per l'identificazione di biomarcatori diagnostici.
La composizione batterica fecale e salivare dei pazienti con CFS/ME è stata studiata mediante sequenziamento Illumina degli ampliconi del gene 16S rRNA.
Il microbiota fecale dei pazienti con CFS/ME ha mostrato una significativa riduzione di Lachnospiraceae, in particolare di Anaerostipes, rispetto ai gruppi di soggetti senza CFS/ME e un incremento di Phascolarctobacterium faecium e unclassified Ruminococcus. Bacteroides vulgatus, unclassified Bacteroides, Bacteroides uniformis e unclassified Barnesiella sono risultati significativamente più abbondanti nei pazienti con CFS/ME.
Il microbiota orale dei pazienti con CFS/ME ha mostrato un aumento significativo di Rothia dentocariosa. Il profilo metabolico fecale di un sottogruppo di pazienti con CFS/ME ha mostrato un aumento complessivo di SCFA e di derivati dell'indolo rispetto ai gruppi non CFS/ME, suggerendo un aumento dei processi di fermentazione.
I nostri risultati supportano l'ipotesi autoimmune per la CFS/ME e se saranno confermati da studi più ampi, le differenze rilevate nei profili microbici dei pazienti CFS/ME potrebbero essere utilizzate come markers per una diagnosi più accurata e per lo sviluppo di strategie terapeutiche specifiche.The Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), is a severe multisystemic disease characterized by immunological abnormalities and dysfunction of energy metabolism. Recent evidence suggest that there is a strong correlation between dysbiosis and pathological condition. The present research investigated the composition of the intestinal and oral microbiota in CFS/ME patients in comparison to healthy controls and determined whether any observed differences could be useful for the identification of diagnostic biomarkers. The fecal and salivary bacterial composition in CFS/ME patients was investigated by Illumina sequencing of 16S rRNA gene amplicons. The fecal microbiota of CFS/ME patients showed a significant reduction of Lachnospiraceae, particularly Anaerostipes, compared to the non-CFS/ME groups, and an increase of Phascolarctobacterium faecium and unclassified Ruminococcus. Bacteroides vulgatus, unclassified Bacteroides, Bacteroides uniformis and unclassified Barnesiella resulted significantly more abundant in CFS/ME patients. The oral microbiota of CFS/ME patients showed a significant increase of Rothia dentocariosa. The fecal metabolic profile of a subgroup of CFS/ME patients revealed an overall increase of SCFAs and indole derivatives compared to the non-CFS/ME groups, suggesting an increase in the fermentation processes. Our results support the autoimmune hypothesis for CFS/ME condition and if confirmed by larger studies, the differences detected in the microbial profiles of CFS/ME patients may be used as markers for a more accurate diagnosis and for the development of specific therapeutic strategies.
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Haig-Ferguson, A. "The impact of managing a child's chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) on family relationships." Thesis, University of the West of England, Bristol, 2014. http://eprints.uwe.ac.uk/23622/.
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Although there is a large body of research literature concerning the impact of childhood chronic illness on family relationships, very little of this has specifically focussed on the impact of childhood Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME). The current study therefore aims to investigate the impact of having a child with CFS/ME on family relationships from the perspective of parents. This study takes a qualitative approach. Semi-structured interviews were used to explore 18 parents’ experiences of having a child with CFS/ME and the impact this has had on family relationships. Interview data were transcribed and analysed using thematic analysis. The analysis led to the identification of 5 main themes: “Long and Difficult Journey”, “Uncertainty”, “Isolation and Restriction”, “Focus on the unwell person at the expense of family life” and “Parental roles”. They felt that life had become a constant struggle and often felt exhausted. They felt uncertainty, isolation and restriction. These parents talked about feeling like family life had become focussed on their unwell child, such that some expressed a need to escape from the situation. They also described how, as a consequence of managing their child’s CFS/ME, family members could often feel marginalised and the illness could be seen as a destructive force. However, many parents also described working as a team and feeling that family relationships had benefitted in some way. The results of this study are in line with findings of other studies into other chronic illnesses. In addition, this is the first study to focus exclusively on the impact of CFS/ME on family relationships from the perspective of the parents, and is unique in that there is a dual focus on both mothers and fathers. Clinicians should be aware that parents of children with CFS/ME may need additional support, such as information as to what to expect at various stages of the illness and where to access the relevant support.
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Velleman, Sophie. "The psychological wellbeing of siblings of children with CFS/ME : a qualitative study." Thesis, University of Exeter, 2012. http://hdl.handle.net/10036/3716.
Full textAbstract:
Chronic Fatigue Syndrome or myalgic encephalopathy (CFS/ME) has a negative impact on a child and their parents. It is not known what the impact is for the siblings of children with CFS/ME. Nine siblings participated in semi-structured interviews. Siblings identified a number of negative impacts to their family and to themselves, as well as describing some protective family factors. These findings have implications for current practice in CFS/ME paediatric services.
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Lombard, Amanda. "Jeugdiges met kroniese uitputting : 'n opvoedkundig-sielkundige benadering." Thesis, 2014. http://hdl.handle.net/10210/9357.
Full textAbstract:
D.Ed. (Nursing)This research aims at the description of a therapeutic approach relevant to the youth suffering from chronic fatigue syndrome and includes his family, school and peer group. According to relevant literature it appears that chronic fatigue impacts negatively upon the total functioning of the youth. The physical demands of the condition leads to continual school-absenteeism, dysfunctional socialising and variable familial relationships. The condition is not easily diagnosed in youth as symptoms are often ascribed to school-phobia, deviant behaviour and/or psychological problems. In view of the fact that the researcher is of the opinion that the condition of the youth is not readily understood by his peers, family and school, the researcher aims at examining the experience of the youth who manifests chronic fatigue syndrome. The youth forms part of a specific system which is also affected by the chronic-fatigue-syndrome. Thus the research is aligned to a systemic approach. The researcher has decided to follow a qualitative research approach, with the deliberate choice of two youths subjected to the utilisation of multiple data-gathering sources. Multiple data-gathering includes interviews, document analysis and observation. The data has been analysed with the assistance of two independent coders and central themes have been established. Case study reports have been complied according to processed data. Hereafter a literature-control was applied to compare the results of this research with other available research and to point out new insights into chronic-fatigue syndrome gained from this research.
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Gibbons, Ruth Elizabeth Anne. "A table of metaphors : the visual representation of chronic illness : a thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Social Anthropology at Massey University, Albany, New Zealand." 2010. http://hdl.handle.net/10179/1520.
Full textAbstract:
For people who live with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity syndrome illness is a hidden construct. The body does not display the chronicity of the internal experience. This thesis removes the barrier between what is experienced and what is visible by creating visual means of communicating the body’s hidden experience. The place of the viewer is part of this discussion. Through visual methods digital photographic techniques and the current interest in sensory anthropology the embodied sensory chronic illness experience is explored. The hidden experiences were made visual creating “MeBoxes” and masks which showed both the external and embodied internal experiences of chronic illness. As the process of working with and walking beside the participants developed, I found that the discourse on imaging within the literature was inadequate to show the real lived experiences of those with chronic illness. My interactions with the people of this thesis and the process of honouring their experiences required a model that would encourage the viewer to new and perhaps unrealised depths of participation to understand the participant’s multi-faceted and multi-layered experiences. Part of the discussion is the ability of images to communicate sensory experience as is the case with Munch’s The Scream and Picasso’s Guernica. Through the use of a hypertextual self-scape I show how participants created access to their experiences through their visual representations and through a collaborative approach became composite hypertextual self-scape metaphors.