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Carlsson, Sascha, and Charlotte Bernung. "ME/CFS - livskvalitet, aktivitetskompetens och värdering av aktivitet : En enkätstudie om myalgisk encefalomyelit/kroniskt trötthetssyndrom (ME/CFS)." Thesis, Hälsohögskolan, Högskolan i Jönköping, HHJ, Avd. för rehabilitering, 2018. http://urn.kb.se/resolve?urn=urn:nbn:se:hj:diva-40376.
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Bakgrund och syfte: ME/CFS påverkar i hög grad aktivitetsförmågan, med många olika kroppsliga symptom. Även små ansträngningar kan ge kraftig försämring. För fungerande vardag krävs planering och prioritering av aktiviteter, vilket förutsätter att den drabbade vet vilken ansträngning som åtgår och vad som är viktigast. I detta arbete undersöks hur ME/CFS-drabbade upplever förmågan att utföra vardagsaktiviteter, hur viktiga aktiviteterna är, i vilken grad uppgifter bortprioriteras av hälsoskäl samt hur hälsorelaterad livskvalitet skattas. Metod: Enkätundersökningen besvarades av 32 respondenter (16-76 år) med diagnostiserad ME/CFS. Aktivitetskompetens och värdering skattades med Min Mening och hälsorelaterad livskvalitet med SF-36. Det frågades också om aktiviteten bortprioriteras av hälsoskäl. Sämsta och bästa läge kunde anges för att återge eventuell variation i förmåga. Resultat: Aktivitetskompetensen skattas lågt (28 - 35 av 100) och värdering av aktiviteter ligger betydligt högre (61). Hälsorelaterad livskvalitet redovisas för åtta områden, där fysisk rollförmåga är särskilt låg (2 av 100). Vitalitet (10), fysisk funktion (24) och allmän hälsa (25) skattas också lågt. Slutsats: Personer med ME/CFS kan uppleva mycket stora begränsningar i vardagliga aktiviteter vilket kan leda till låg aktivitet och delaktighet. De värderar aktivitet högt och sjukdomen leder därför till ofrivillig isolering som måste motverkas av kunnig sjukvårdspersonal med kompetens inom energibesparande tekniker.Background and purpose: ME/CFS widely affects occupational competence, with many various physical symptoms. Even small efforts can cause severe deterioration. To achieve a functioning everyday life, planning and prioritization is crucial, and the individual must know what effort is needed for each activity and what matters most. This thesis examines how people with ME/CFS experience their ability to perform everyday activities, the value of activities, if activities are avoided for health reasons, and how health-related quality of life is assessed. Method: The survey was answered by 32 ME/CFS-diagnosed respondents (16-76 years). Occupational competence and the value of occupations were assessed by Occupational Self Assessment (OSA), and health-related quality of life by SF-36. It was also asked if respondents refrained from activity for health reasons. The respondents were able to specify worst and best case to reflect fluctuations. Results: Occupational competence is assessed low (28-35 out of 100) and the value of activities is assessed considerably higher (61). Health-related quality of life is reported for eight subscales, where physical ability to exercise roles is particularly low (2 out of 100). Vitality (10), Physical Functioning (24) and General Health (25) are also scored low. Conclusion: People with ME / CFS can experience very high limitations in everyday activities, which can lead to low degree of activity and participation. They value activity high and the disease therefore leads to involuntary isolation that must be counteracted by proficient healthcare professionals with expertise in energy-saving technologies.
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Oliver, Nicholas. "ME/CFS, medicine and self help groups : a qualitative exploration." Thesis, University of East London, 1998. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.532426.
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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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Stevenson, Clare. "Patient experience of cognitive behaviour therapy for chronic fatigue syndrome (CFS/ME)." Thesis, University of East London, 2003. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.532532.
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Hemming, Claire. "Exploring the relationship between service-users' with CFS/ME and NHS professionals." Thesis, University of Leicester, 2005. http://hdl.handle.net/2381/31213.
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Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (hereafter referred to as CFS/ME) is a multi-system chronic illness, sufferers of which experience a range of symptoms that are often different in each individual case. The sole commonality amongst all sufferers appears to be severe and disabling fatigue (Sharpe et al. 1991). Despite the body of literature that has investigated the possible aetiology of CFS/ME, to date there is no known cause of the long-term condition (Erdman, 2003). Current systematic reviews of randomized control trials (RCTs) investigating the efficacy of treatment of CFS/ME identify cognitive-behavioural therapy (CBT) and graded exercise therapy (GET) as the most effective evidence-based interventions (Erdman, 2003; Bagnall et al. 2002). There are, however, inconsistencies and disagreement in the evidence-base, adding a further layer of uncertainty to an already uncertain long-term condition. A service-user dissatisfaction with NHS services and professionals are frequently reported in the CFS/ME literature, the current literature review explores whether attachment theory could offer a different and useful perspective regarding the treatment of people with CFS/ME. An attachment relationship can be defined as any relationship where proximity to the other affects perceived security (West & Sheldon-Kellor, 1994). Proximity seeking is most apparent when a person is frightened, fatigued or sick, and gains some relief by receiving comfort and care-giving (Bowlby, 1979). In view of reconsidering CFS/ME from an attachment theory perspective the latter of the literature review explores the current research regarding attachment theory and illness, and the available research linking adult attachment needs and engagement with Health Services. The relevance of using attachment theory to inform the treatment of people with CFS/ME is then discussed.
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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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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.
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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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Berg, Ingrid Helene. "The Relationship Between Insomnia and CFS/ME : The HPA Axis as a Mediator." Thesis, Norges teknisk-naturvitenskapelige universitet, Psykologisk institutt, 2013. http://urn.kb.se/resolve?urn=urn:nbn:no:ntnu:diva-25191.
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Fatigue is common in the general population, and is the hallmark of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Although the occurrence of sleep difficulties is known to be common in subjects with fatigue, research on insomnia in such subjects is absent. The current study sought to examine the impact comorbid insomnia has on level of fatigue in subjects with chronic fatigue. The aim of this study is to assess the relationship between insomnia and chronic fatigue, and examine if the relationship is affected by the endocrine activity in the HPA axis. The following hypotheses were tested: 1) Do patients with chronic fatigue and comorbid insomnia experience more fatigue than patients with chronic fatigue without comorbid insomnia? 2) Do patients with chronic fatigue and with initially comorbid insomnia experience more fatigue after treatment than chronic fatigue patients without comorbid insomnia? 3) Do patients with chronic fatigue who experience improvement in insomnia after treatment also experience less fatigue by the end of treatment compared with patients who do not experience improvement in insomnia? 4) Is the potential relationship between insomnia and chronic fatigue influenced by the activity of the HPA axis as expressed by variation in cortisol output measured by Trier Social Stress Test for Groups (TSST-G)? The study sample consisted of 75 patients with chronic fatigue. Thirty-three met criteria for insomnia, while 42 did not. While staying at Hysnes Rehabilitation Center in Trondheim, Norway, they received a work-related Acceptance and Commitment Therapy (ACT) treatment intervention lasting 3.5 weeks. In addition, they participated in a standardized stress test (Trier Social Stress Test) pre- and post-treatment. Saliva cortisol samples were collected during the test in order to measure variation in cortisol output. The current finding is the first description of how insomnia in patients with chronic fatigue is associated with higher levels of fatigue (p < .05). Further, this study gives preliminary support indicating that remission of insomnia in patients with chronic fatigue can significantly reduce levels of fatigue (p < .05), and furthermore improve the physiological stress-response (p < .05). These results might encourage clinicians to assess and provide specific treatment for insomnia in patients with chronic fatigue as this might improve their treatment results. An aim for further research should be to investigate the effect of specified treatment for insomnia in patients with chronic fatigue.
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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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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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Sandberg, Emma. "Respektfull design: För ökad förståelse och vilja att förändra : FUCK ME, en utställning om den svåra sjukdomen ME/CFS." Thesis, Luleå tekniska universitet, Institutionen för ekonomi, teknik och samhälle, 2020. http://urn.kb.se/resolve?urn=urn:nbn:se:ltu:diva-79356.
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In this essay, I go through the different parts that compile my degree project. I have explored the power of graphic design for educational purposes. During my process, I have found a new area of graphic design, respectful design. Something that can be briefly described as design created with the greatest reverence for conveying a difficult subject without diminishing the affected person behind. An approach where one works closely with the involved and frequently checks in, so that nothing is portrayed incorrectly. This along with the constant search for information makes up the basics of respectful design. The disease ME has finally begun to be talked about in society. But the way the disease is portrayed can be argued as incorrect in relation to the bigger picture. As a graphic designer I have analyzed the problem and worked out a possible solution. My conclusion is that strong colors mixed with melancholy and straightforward information can make the subject less heavy and easier to handle. This can open the senses to problem solving and understanding instead of stopping at pity. The aim of the project has been to get away from these dark quilts that the media has placed on us. The goal was to create something that does not hide the awfulness of the disease but informs in a more fun and more inviting way. I strongly believe that graphic design can reduce the social stigma around a topic if done properly. When life is the toughest it has helped me and (after the response of the exhibition) others to learn more about our disease. Above all, if more people know more about the disease, ME- patients will get help. Hopefully society will open it’s arms so that no more people are forced to choose suicide.I denna uppsats går jag igenom de olika delarna som sammanställer mitt examensprojekt. Jag har i grunden utforskat kraften av grafisk design i utbildningssyfte. Under min process har jag kommit fram till ett nytt område inom grafisk design, respektfull design. Detta går kort att beskriva som design utformat med största vördnad inför att förmedla ett svårt ämne utan att förminska den drabbade människan bakom. Respektfull design innebär att man jobbar nära med inblandade, kollar av hela tiden så att inget porträtteras felaktigt och läser på om ämnet så långt det går. Sjukdomen ME har äntligen börjat talas om i samhället. Men sättet sjukdomen porträtteras kan argumenteras som svartvitt och felaktigt gentemot helhetsbilden. Som grafisk designer har jag analyserat problemet och jobbat fram en möjlig lösning. Min slutsats är att starka färger blandat med melankolisk och rak information kan göra ämnet mindre tungt och mer lätthanterligt. Detta kan öppna sinnena för problemlösning och förståelse istället för att stanna vid medlidande. Syftet med projektet har varit att komma ifrån detta mörk täcke som media lagt över oss. Målet var att skapa något som inte döljer det hemska med sjukdomen men informerar på ett roligare och mer inbjudande sätt. Jag tror stark på att grafisk design kan minska det sociala stigmat runt ett ämne om det görs på rätt sätt. När livet är som tuffast har det hjälpt mig och (efter respons av utställningen) också andra med att utbilda och läsa på. Framför allt om fler vet mer om sjukdomen kommer det att gå att få bättre hjälp. Förhoppningvis öppnar samhället sina armar så att inte fler tvingas till att välja självmord.
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Perrin, R. N. "The involvement of cerebrospinal fluid and lymphatic drainage in chronic fatigue syndrome (CFS/ME)." Thesis, University of Salford, 2005. http://usir.salford.ac.uk/2150/.
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A novel osteopathic treatment has been discovered during the clinical practice of the author which alleviates many of the symptoms of chronic fatigue syndrome (CFS) known in the UK as CFS/ME. The efficacy of this manual approach was tested using two separate clinical trials. The first examined the change in the symptoms following a year of treatment. The second repeated the first study and examined the possible mechanisms of the improvement. The studies were designed to develop a greater understanding of the disorder, for which there is much scientific uncertainty regarding the cause, diagnosis and treatment. Phase 1 of the research trials included self report questionnaires to examine overall symptom change. With post-exercise fatigue being a major symptom of CFS/ME, the treatment protocol was best evaluated by determining its effects on muscle function which was analysed utilising isometric testing of the knee extensor muscles measuring the impulse torque. The second trial, which included the same self report questionnaires assessing symptom relief as in the initial trial, was divided into two parallel phases. Phase 2 primarily took the form of brain analysis using magnetic resonance imaging (MRI) to confirm if brain abnormalities seen in previous research were found in sufferers of CFS/ME. No cerebral abnormality was detected in the patient group. Central lymph scans were also carried out showing a possible trend of enlargement in CFS/ME sufferers. In the other part, phase 3, isometric tests were repeated with more accurate equipment than in phase 1. Integrated EMG and median frequency of the power spectrum were measured using surface electromyography (sEMG). Overall this study has provided strong evidence that an important component of CFS/ME involves a disturbance of lymphatic drainage of the brain and muscles. The novel osteopathic treatment developed by the author has been statistically validated in both phases of the study, emphasising the need to focus future research on the biomechanical aspectso f this disorder.
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Collett, Tracey Jane. "Non-legitimate illness, embodied experience and the moral career : the case of ME/CFS." Thesis, University of Plymouth, 2002. http://hdl.handle.net/10026.1/2800.
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The condition known as myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is an illness of unknown aetiology which affects over 150 000 persons in the UK. Whilst the cause of the condition is the subject of intense medical debate, the official view is that it is a form of atypical depression or somatisation disorder. This view is at odds with the views of many sufferers who claim that ME/CFS is a pathological disease that renders them severely incapacitated. Sufferers' maintain that, because their condition is regarded as a minor, psychological illness, its' severity is not recognised. Thus, rather than being granted assistance, their appeals for help are often met with accusations of malingering or hypochondriasis. This, they argue, results in significant marginalisation. In short, sufferers' state that they experience bodily change that is profound and disabling, however, their claims to be `really ill', are ignored. ME/CFS is one of a number of conditions whose meanings are contested. Other such conditions include Gulf war syndrome, repetitive strain injury, organophosphate poisoning, and multiple chemical sensitivity. These conditions are worthy of sociological study because they `make visible' the way that social definitions of illness impact on the experience of illness. The data for this thesis is derived from an empirical study of sufferers' experiences of ME/CFS. Using both qualitative and quantitative research methods, the study explores the embodied experience of ME/CFS and the illness careers of sufferers. The findings of the study are analysed in the light of the sociological literature on `the cultural expectations surrounding illness', `embodiment' and `the experience of illness'. Whilst the past literature has either focused on `the cultural expectations surrounding illness' or `the experience of illness', this thesis brings together the two areas and uncovers the complex set of relations and pathways that emerge when ideas about illness clash. The findings have implications for the sociological understanding of the illness experience. They are particularly relevant because, as the chronically ill population expands, there is an increasing emphasis on individual responsibility for illness. Thus, whilst contested illnesses are a blatant example of what happens when sufferers' are held accountable for being ill, the findings have implications for the experience of all chronic illness.
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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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Karlsson, Rebecka. "”Det värsta som har hänt, någonsin” -En kvalitativ studie om myalgisk encefalomyelit-sjukas situation samt om individuellt och institutionellt bemötande." Thesis, Örebro universitet, Institutionen för humaniora, utbildnings- och samhällsvetenskap, 2021. http://urn.kb.se/resolve?urn=urn:nbn:se:oru:diva-92572.
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In 2020, many Swedes were infected by the COVID-19 virus. The individuals who now suffer from post-COVID conditions have symptoms that resemble the neurological disorder myalgic encephalomyelitis (ME). ME is predicted to increase in the aftermath of the pandemic. Both post-Covid and ME patients commonly encounter misunderstandings, a lack of treatment options and experience difficulties with the Swedish Social Insurance Agency. The purpose of this study is to examine how patients with ME experience their condition to affect the relationships to people in their everyday life and the reception from the health care system as well as the Swedish Social Insurance Agency. The study also examines important factors in coping with the condition. Previous research on the disorder shows difficulties with getting diagnostic legitimacy, a drastically diminished social life, stigma and traumatic experiences with the Swedish Social Insurance Agency. This study is based on six semi-structured video interviews with people who have ME. The analysis of the results has its foundation in Goffman’s dramaturgical theory and his concept of stigma. It further draws on Elias’ and Scotson’s explanation of moral differentiation and Antonovsky’s determining factors of coping with traumatic events. The empiric material shows that having ME leads to a diminished group of friends, which seems to affect the young participants the most. They are also more prone to stigmatization by superficial acquaintances and new contacts. A shared experience among the participants is stigmatization in primary care, which also complicates their encounters with the Swedish Social Insurance Agency. Emotional, practical and financial support make it easier to handle the situation. When needed, it is essential to be able to rest. The situation also becomes easier to handle if the individual is able to create meaning from the new life circumstances.2020 smittades många svenskar av covid-19. De individer som drabbats av långtidscovid har en symptombild som liknar den neurologiska sjukdomen myalgisk encefalomyelit (ME). En sjukdom som förutspås öka i spåren av pandemin. Båda dessa patientgrupper möts av oförståelse, brist på behandlingsalternativ och problem med Försäkringskassan. Denna studie ämnar undersöka hur ME-sjuka upplever att sjukdomen påverkar relationen till de människor individen möter i vardagen samt bemötandet från vård och Försäkringskassan. Den fokuserar även på vad som är viktigt för individens hantering av situationen som sjuk. Tidigare forskning om sjukdomen visar på problem med diagnostisk legitimitet, krympta sociala nätverk, stigmatisering och traumatiserande behandling av Försäkringskassan. Studien är baserad på 6 semistrukturerade videointervjuer med ME-patienter. Resultaten har analyserats utifrån Goffmans dramaturgiska perspektiv samt teori om stigma. Vidare används Elias och Scotsons beskrivning av moralisk differentiering samt de faktorer Antonovsky uppger som avgörande för att hantera traumatiska händelser. Empirin visar att ME leder till en reducerad vänskapskrets, vilket de unga lider mest av. Unga är i större mån även utsatta för stigmatisering av ytliga bekanta och nya kontakter. Samtliga deltagare upplever stigmatisering inom primärvården, vilket bidrar till en komplicerad ärendeprocess hos Försäkringskassan. Hanteringen av situationen som sjuk främjas av emotionellt, praktiskt och ekonomiskt stöd, möjlighet att vila samt att utifrån nya förutsättningar finna mening i livet.
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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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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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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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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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Essebo, Jenny, and Diyana Joqi. "Att leva med Myalgisk encefalomyelit/ Chronic Fatigue Syndrome (ME/CFS) : En beskrivning av vuxna personers upplevelser." Thesis, Blekinge Tekniska Högskola, Institutionen för hälsa, 2020. http://urn.kb.se/resolve?urn=urn:nbn:se:bth-19116.
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Bakgrund: Myalgisk encefalomyelit/ Chronic Fatigue Syndrome (ME/CFS) är en komplex kronisk sjukdom med okänd etiologi och utan medicinsk botande behandling. Kunskapen om sjukdomen är låg bland hälso-och sjukvårdspersonal vilket kan leda till att patienter får gå lång tid utan stöd. Sjuksköterskan är ansvarig att uppdatera sina kunskaper och stödja personerna genom personcentrerad vård för att uppnå hälsa och minska lidande. Genom att studera personers egna upplevelser av sjukdomen, utifrån deras livsvärld, kan ny kunskap och förståelse skapas. Syfte: Att beskriva vuxna personers upplevelse av att leva med Myalgisk encefalomyelit/ Chronic Fatigue Syndrome (ME/CFS) Metod: Till metod valdes en kvalitativ litteraturstudie med en induktiv ansats baserad på två patografier och sju kapitel ur en antologi. Innehållsanalysen gjordes efter inspiration från Lundman och Hällgren Graneheims beskrivning, analysen skedde huvudsakligen manifest med latenta inslag. Resultat: Analysen resulterade i tre kategorier och sex underkategorier. I kategorin Sjukdomens konsekvenser begränsar livet framkom att personerna upplevde att livet begränsades på grund av de förändrade fysiska och mentala förmågorna. I kategorin Förändrat jag framkom att personerna upplevde att den de var förändrades. I kategorin, Svårigheter att hantera sjukdomen, framkom att personerna upplevde svårigheter att lära sig leva med och acceptera sjukdomen, men att de lärde sig hantera den med hjälp av olika strategier och ett nytt sätt att tänka. De beskrev även upplevelser av bristande kunskap, svårigheter att få en diagnos och en känsla av att inte bli tagen på allvar i kontakt med vården. Slutsats: Myalgisk encefalomyelit/ Chronic Fatigue Syndrome (ME/CFS) har en djup påverkan på hela personen, fysiskt, mentalt och psykiskt liksom att den påverkar relationer, familjedynamik, funktionsförmåga, välbefinnande och vardagsliv. Sjukdomen är svår att lära sig leva med och det finns ett behov av stöd, strategier och information från sjukvården för att underlätta personens anpassning till vardagen och välbefinnande.
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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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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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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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Band, Rebecca Jane. "Significant others, patient outcomes and maintenance of symptoms in chronic fatigue syndrome." Thesis, University of Manchester, 2014. https://www.research.manchester.ac.uk/portal/en/theses/significant-others-patient-outcomes-and-maintenance-of-symptoms-in-chronic-fatigue-syndrome(c60fc232-698b-4669-9c53-fb8b4f31994c).html.
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This thesis explored significant other responses to CFS/ME in association with patient illness outcomes and symptom maintenance utilising a multi-method approach; a systematic review, cross-sectional, longitudinal and momentary methods were included. The review identified empirical evidence for two potential interpersonal mechanisms. The evidence suggested that significant other beliefs and responses, dyadic relationship quality, and patient outcomes associated with each mechanism were different. Dyadic belief incongruence was also highlighted as important with respect to relationship quality. Thus, potential research questions and current methodological limitations were identified; the subsequent empirical papers presented attempted to address these. The first empirical study (Chapter 3) utilised the Expressed Emotion (EE) framework to investigate the impact of critical comments and EOI; no cross-sectional associations between EE and patient outcomes were observed. A longitudinal design was also employed to examine the predictive validity of EE. Longitudinally, high critical comments predicted higher fatigue severity; further analyses indicated that depression mediated this relationship. High EOI was also predictive of higher fatigue severity at follow-up. This was the first study to examine EE within a CFS/ME sample; the longitudinal impact of high-EE upon patient outcomes suggests that it is a potentially beneficial target for future interventions. Paper 2 (Chapter 4) sought to examine the factors that might contribute to significant other EE by examining significant other illness beliefs and dyadic belief incongruence. The results indicated that significant others rated as high-EE had stronger illness models, more negative beliefs about the consequences associated with the condition, and negative emotional representations. These findings identify those beliefs that may be particularly important for high-EE within the current patient group. Overall dyadic belief incongruence was not important for EE-rating; high-EE dyads reported similar illness beliefs, whilst low-EE significant others reported more optimistic beliefs about the condition. These findings suggest that optimistic beliefs about the condition may be better for both significant other and patient outcomes. The final empirical study (Chapter 5) examined the associations between significant other negative and solicitous responses and fluctuations in patient illness outcomes on a momentary basis. The impact of significant other responses was largely transitory; changes in patient outcomes did not extend past the current momentary assessment. Negative significant other responses were associated with momentary increases in symptom severity; patient distress partially mediated this relationship. Patient-perceived solicitous responses were associated with increased activity limitation, but reduced disability reported at the same momentary assessment. These results suggest that momentary reports capture more dynamic processes than observed in traditional cross-sectional analyses. Taken together, the findings presented within this thesis provide further evidence for the impact of significant other factors on patient outcomes. The evidence for the hypothesised mechanism associated with critical EE was consistent throughout studies. However, the evidence for the role of EOI currently requires further exploration. Finally, the results suggest that the development of significant other-focussed interventions may be beneficial for both patient and significant other outcomes.
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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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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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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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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/.
Full textAbstract:
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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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.
Full textAbstract:
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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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.
Full textAbstract:
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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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.
Full textAbstract:
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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Wallis, Amy. "Microbiota-Gut-Brain Interactions in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Focus on Neuropsychological Symptoms and Sex Comparisons." Thesis, 2017. https://vuir.vu.edu.au/37869/.
Full textAbstract:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic,
disabling condition with debilitating fatigue and neuroimmune symptoms. Consensus about
diagnosis, pathogenesis and efficacious treatments for ME/CFS are yet to be elucidated.
Advances in the understanding of microbiota-gut-brain interactions in healthy and disease
states, combined with evidence of gastrointestinal symptoms and gut dysbiosis in individuals
with ME/CFS has directed investigation towards the role of enteric microbiota in this
condition. The body of work presented in this thesis includes five publications based on
reviews and empirical research conducted over the past 3.5 years.
The first review paper (Paper 1) found preliminary evidence to support the proposal
that microbiota-gut-brain interactions may contribute to sleep, mood and cognitive symptoms
but revealed gaps in knowledge with few empirical studies that have investigated commensal
microbiota in patients with ME/CFS. Papers 2 and 3 describe the results of a correlational
analyses between microbiota and ME/CFS symptoms in a cross-sectional, retrospective study
of 274 ME/CFS patients. A notable finding from this study included sex-specific interactions
between gut microbiota and symptom expression in ME/CFS, signaling possible sex
differences in microbial function.
The systematic review examining symptom and etiological overlap between D-lactic
acidosis and ME/CFS in Paper 4, revealed preliminary support for the hypothesis that
subclinical concentrations of D-lactate from bacterial dysbiosis may be a mechanism
contributing to several ME/CFS symptoms (including fatigue, neurocognitive impairments,
pain, sleep disturbances, motor disturbances, gastrointestinal abnormalities, cardiovascular,
respiratory, thermostatic, and comorbid mood and behavioural disturbances). The review
highlighted the gaps in knowledge without measurement of D-lactate concentrations in
ME/CFS samples.
Paper 5 presents the results of an open-label, repeated-measures trial examining the
efficacy of a 4-week treatment (alternate weeks of Erythromycin and D-lactate free probiotic)
for an overgrowth of commensal Streptococcus species in 44 adult patients with ME/CFS.
Large time effects were shown including a reduction in Streptococcus count and
improvement on several clinical outcomes (sleep, cognition and total symptoms) for the total
sample at post intervention. Ancillary results highlighted individual variability in microbial
changes and the importance of other genera with changes in Bacteroides, Bifidobacteria and
Clostridium and associated with clinical changes in males.
In combination, the analysis of literature and results from both cross-sectional and
experimental studies substantiate the theoretical premise that microbiota and gut dysbiosis
contribute to specific neuropsychological symptoms in some ME/CFS patients. Our
mechanistic understanding of gut dysbiosis will be advanced by multidisciplinary
investigations that include assessment of clinical symptoms, the microbiome (combined
sequencing and culture techniques), metabolites, oxidative and inflammatory markers, and
immune profiles that help identify possible factors contributing to, precipitating or
perpetuating imbalances in microbial composition. These advances may help clarify
diagnostic discrepancies and inform efficacious treatment alternatives that are responsive to
individual variability.