Thesis (MEd (Distance Education))--Deakin University/University of South Australia, 1993

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.

Thesis (DPhil)--Stellenbosch University, 2004. / ENGLISH ABSTRACT: This qualitative study comprised an in-depth investigation into the subjective - the explicitly human - experience of those suffering from Myalgic Encephalomyelitis (ME). I was, firstly, concerned with the nature and meaning of the social side of illness, that is, the sufferer's encounters with doctor, family member, friend and acquaintance alike. I was, secondly, set to develop greater insight into the essentially personal experience of being ill. I was able to conclude that, even amidst the inhumane presence of utter ignorance that permeate the very experience of ME, no ME sufferer is inevitably doomed a victim. They can always make a deliberate decision to have a say in their situation, in their own experience of their circumstances. They have the power of personal choice. Recommendations are, therefore, directed at expanding the potential extent and magnitude of this dynamic power. The substantive focus of my study was enriched by a deliberate concern with the methodological implications of my own intimate involvement within the research process. I was here primarily concerned with my personal contribution to the research process as well as the influence thereof on the research relationships developed and the research strategies chosen and applied. I could not but conclude that the understanding I explicate is, as all social science theory, essentially a human construction, developed by me, in my distinctly human capacity. Recommendations are, therefore, geared to sensitise all social researchers to their own contribution to the construction of that which is eventually presented (and taken) as truthful knowl~dge. In conclusion, I am thoroughly convinced that the experience of both illness and research is fundamentally human. This "humanness" cannot and should not be denied. Instead, I advocate a more deliberate focus on the human dimension of illness and research. Without such a focus, a more comprehensive understanding of either realm will continue to linger as but an elusive ideal. / AFRIKAANSE OPSOMMING: Hierdie kwalitatiewe studie is gebaseer op 'n in-diepte ondersoek gerig op die subjektiewe - die onteenseglik menslike - ervaring van diegene wat ly aan Myaligië Enkefalomiëlitis (ME). Ek was, eerstens, geïnteresseerd in die aard en betekenis van die sosiale dimensie van siekte, dit wil sê, die lyer se ervaring van sosiale kontak met dokters, gesinslede, vriende en kennisse. Ek was, tweedens, gerig op die ontwikkeling van 'n grondige insig in die uiters persoonlike ervaring van siek-wees. Ek het tot die gevolgtrekking gekom dat, selfs te midde van die onmenslike teenwoordigheid van blatante onkunde wat die ganse ervaring van ME kenmerk, geen ME lyer noodwendig tot 'n slagoffer-status gedoem is nie. Hulle kan altyd 'n doelbewuste besluit neem om 'n sê te hê in hul eie situasie, in hul eie ervaring van hul omstandighede. Hulle het die mag van persoonlike keuse. Aanbevelings is dus daarop gerig om die potentiële trefwydte en impak van hierdie dinamiese mag uit te brei. Die substantiewe dimensie van my studie is verryk deur 'n doelbewuste fokus op die metodologiese implikasies van my eie intieme betrokkenheid in die navorsingsproses. Ek was hoofsaaklik gemoeid met my persoonlike bydrae tot die navorsingsproses en die invloed daarvan op die ontwikkel van navorsingsverhoudings en die toepassing van gekose navorsingstrategieë. Hierdie fokus het gelei tot die besef dat die beskrywing wat ek aanbied, soos inderdaad alle sosiale teorie, essensieël 'n menslike konstruksie is, soos ontwikkel deur my, in my uitdruklik menslike kapasiteit. Aanbevelings is dus daarop gerig om alle sosiale navorsers te sensitiseer ten opsigte van hul eie bydrae tot die konstruksie van dit wat uiteindelik voorgestel (en geag) word as die waarheidsgetroue kennis. In slotsom, is ek oortuig dat die ervaring van beide siekte en navorsing fundamenteel menslik is. Hierdie "mensheid" kan en behoort nie ontken te word nie. Inteendeel, ek bepleit 'n doelbewuste fokus op die menslike dimensie van siekte en navorsing. Sonder só 'n fokus sal 'n meer diepgaande begrip van iedere area bloot 'n onbereikbare ideaal bly.

Myalgic encephalomyelitis (ME), also referred to as chronic fatigue syndrome (CFS), is a symptomatically defined and debilitating condition that presents as a range of physiological and psychological effects. Post-exertional fatigue and ongoing low energy levels are cardinal features. Whilst ME-like conditions have been recognised for at least two hundred years, they have been characterised over recent decades by a fiercely contested debate as to whether aetiology is primarily psychological or physiological. ME sufferers experience profound changes to their self-perception, ability to maintain daily routines and activities and how they are perceived in terms of their capacity to carry out social roles, including illness-status. The contested aetiology results in-part from a climate of dualistic thought and the biomedical model upon which ME is treated and theorised. Whilst the effects of ME on self experience have been investigated from various qualitative and quantitative perspectives, the primary purpose of this thesis is to develop a psychosocial framework from which to explore previously neglected dimensions of the effect of ME on self experience. Developing a psychosocial understanding of ME is in keeping with a turn towards post-Cartesian and non-dualistic thinking. The second interconnected purpose of this thesis is to address the role played by the material environment and objects and to conceptualise their importance and relation to self and how it is affected by ME. This is currently absent in the literature on ME. Developing a psychosocial framework suitable for this purpose rested on a synthesis of Actor Network Theory (ANT) and a psychoanalytically influenced use of metaphor and metonymy. At the heart of this synthesis are the notions of relational ontology (Latour, 1997; DeLanda, 2002) and assemblage (Deleuze and Guattari, 1987; DeLanda, 2002; Hodder, 2012). A relational ontology focuses on the relations between disparate objects such as material artefacts, humans, other organisms and concepts and avoids prioritising any one ‘thing’ as more important than another. The notion of assemblage has emerged alongside ideas concerning complexity, chaos and indeterminacy and informs a vocabulary addressing the problem of causality, determination and the stability of social and psychological phenomena (Venn, 2006). As part of a psychoanalytically informed psychosocial framework these concepts enable an exploration of ME by bringing together disparate aspects such as everyday objects, experiences, symptoms and environments in a non-causal, non-dualistic and processual manner. The psychoanalytic element also enables an exploration of the unconscious and irrational aspects of experience, which is most pertinent with regards to the effects of ME. Thus, the premise of this research was to establish a psychosocial methodology and theoretical basis from which to explore the effects of ME on self experience. Moreover, this methodology was designed to engage with the complex, coincident and entangled nature of the symptoms, discourses, objects, material artefacts, environments and non-human organisms that ME appears to be comprised of. Methods were developed which enabled the researcher to be with and explore the day-to-day life and routines of eight ME sufferers in their everyday environments over a six month period. This involved working with the ME sufferers taking part primarily in their own homes and spaces around their home which they frequented, such as shopping malls and even a cemetery; in itself novel in terms of qualitative research into ME. Of these eight sufferers, three were male [age range 49 – 65; earliest formal diagnosis of ME occurring in 2005] and five females [age range 25 – 63; earliest diagnosis 2002]. Two sufferers were in paid employment, one was retired and five were unable to work due to their ME. Due to the extensive nature of the data, only 3 case studies, two male and three female, were selected for in-depth analysis. Cases selected were those that most clearly illustrated central analytic themes. Data comprised talk, audio-visual material and the affective responses of the researcher. Analytic methods were devised which initially adopted a thematic approach before metaphoric and metonymic equivalences were drawn between what ME sufferers discussed and aspects of the routines, objects and environments they were engaged with. This informed descriptions of how these things became networked, in an ANT sense, and how self experience was implicated. A key finding which emerged is the notion of debilitating spaces. This term captures the manner in which, for certain sufferers, the experience and hence the maintenance of ME was intrinsically enmeshed with their immediate physical environment. Further findings discussed include the way in which seemingly everyday objects such as food blenders can be co-opted by sufferers as a means of enhancing their self-experience in light of ME. Overall, the findings of this PhD are discussed in terms of the success and applicability of that premise and its contribution to the field of psychosocial approaches. The key assertion is that the methodology enhances an understanding of ME and its effects, highlighting the variable yet particular nature of ME and its effect on self experience and in incorporating the hitherto unconsidered range of objects outlined above.

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.

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.

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.

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.

Bakgrund Myalgisk encefalomyelit är en komplex, kronisk, neurologisk sjukdom som kännetecknas av långvarig psykisk och fysisk utmattning. Detta tillsammans med många andra symtom som smärta, yrsel och influensaliknande symtom, där symtomen förvärras vid ansträngning. Sjukdomens etiologi och patofysiologi är fortfarande okänd vilket leder till misstro och missuppfattningar från sjukvården för personen som lever med myalgisk encefalomyelit. Syfte Syftet var att belysa personers erfarenheter av att leva med myalgisk encefalomyelit. Metod Litteraturöversikten är baserad på 18 vetenskapliga kvalitativa och kvantitativa originalartiklar. Dessa återfanns i databaserna CINAHL, PubMed och PsycINFO. De kvalitetsgranskades enligt Sophiahemmet Högskolas bedömningsunderlag modifierat utifrån Berg et al. (1999) och Willman et al. (2011). Dataanalysen gjordes med inspiration från Kristenssons (2014) integrerade analys. Resultat Tre kategorier framträdde i resultatet med utgångspunkt i personernas erfarenhet av: mötet med sjukvården, påverkan på det dagliga livet samt copingstrategier och framtidstro. Resultatet visade att personerna hade erfarenheter av brister i mötet med sjukvården, social isolering och resultatet visade vikten av att ha strategier för att hantera sin vardag. Slutsats Litteraturöversiktens fynd visar vad det innebär för personen att leva med myalgisk encefalomyelit och hur det är att dagligen påverkas av de karaktäristiska symtomen fatigue, smärta och i och med det isolering. Samtidigt har behovet synliggjorts av ökad kunskap, rättvis vård och bättre behandling.

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.