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.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) är en komplex sjukdom av okänd etologi. ME/CFS syns inte på utsidan men leder till funktionsnedsättning i varierande grad. Okunskapen om sjukdomen är stor vilket leder till att många får diagnos i ett sent skede eller en felaktig diagnos. ME/CFS innebär en etisk utmaning för forskningen, samhället och inte minst för sjukvården, då evidens för både omvårdnad och behandling fortfarande saknas. Syftet var att undersöka personers erfarenheter av att leva med ME/CFS. I databearbetningen framkom tre kategorier: möte med vården, påverkan på vardagen samt anpassning till livssituationen. I resultatet påvisas erfarenheter från personer med ME/CFS och hur de upplever bemötandet med vården och den okunskap som råder. Det framkommer att sjukdomen påverkar identitet, relationer och aktivitetsförmåga. Resultatet visar även hur livet förändras samt vilka strategier som krävs för att hantera vardagen när förutsättningarna i livet förändras. För att möta omvårdnadsbehovet hos personer med ME/CFS krävs mer forskning och utbildning för vårdpersonal. / Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex disease of unknown etiology. Although ME/CFS is not visible on the outside, it leads to disability in varying degrees. There is a lack of knowledge regarding the disease, which often leads to a delayed or incorrect diagnosis. ME/CFS represents an ethical challenge for research, society and especially for healthcare professionals since no evidence-based nursing or treatment are available. The aim was to investigate people’s experiences with ME/CFS. Three categories emerged in the data analysis: meeting with the health care, impact on daily life and adaption to the new life situation. The result shows experiences of people with ME/CFS and how they feel they are treated by the healthcare system and the lack of knowledge that exists. It appears that the disease affects identity, relationships and abilities in physical activity. The result also shows how life changes and what strategies are required to manage everyday life when the conditions in life change. To meet the nursing needs of people with ME/CFS, more research on the subject, as well as education for healthcare professionals, are necessary.

abstract: Medical policies, practices, and definitions do not exist solely in the clinical realm; they show up in the lived experiences of patients. This research examines how people with the chronic illness called myalgic encephalomyelitis (ME) define their own illness experiences. They have situated knowledge about their illness onset, search for care, and clinical encounters. Their knowledge complicates and challenges the existing norms in clinical practice and medical discourse, as the experience of searching for care with ME reveals weaknesses in a system that is focused on acute care. Patient narratives reveal institutional patterns that obstruct access to medical care, such as disbelief from clinicians and lack of training in chronic illness protocols. They also reveal patterns in physician behavior that indicate the likelihood of receiving effective care. These patient narratives serve as a basis for continued examination of ME as well as further reconstruction of medical practice and procedure. / Dissertation/Thesis / Masters Thesis Social Justice and Human Rights 2019

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.

<p>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.</p>

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 &amp; 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.

Thesis (Master of Science (Hons.) Social Ecology) -- University of Western Sydney, Hawkesbury, 1994. / "A dissertation submitted in fulfilment of the requirements for the degree of Master of Science (Honours) in Social Ecology in the University of Western Sydney - Hawkesbury" Bibliography : leaves 288-300.

M.A. (Psychology) / Please refer to full text to view abstract

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.

Bakgrund: Orsaken till uppkomsten av myalgisk encefalomyelit/kroniskt trötthetssyndrom är inte helt utredd men vanligtvis debuterar sjukdomen efter en infektionssjukdom, exponering av miljögifter eller vid stress och större livshändelser. Symtomen är många och svårighetsgraden varierar. Det är en svårdiagnostiserad sjukdom utan specifika biomarkörer för diagnosställning. Sjukdomen är ännu outforskad vilket försämrar sjuksköterskans möjlighet att hjälpa personerna på ett personcentrerat sätt. Syfte: Syftet var att belysa erfarenheter av att leva med myalgisk encefalomyelit/kroniskt trötthetssyndrom. Metod: Studien utformades som en allmän litteraturstudie där tio resultatartiklar användes. Analys av resultatartiklarna genomfördes enligt Popenoe et al. (2021). Resultat: I resultatet identifierades tre huvudkategorier följt av åtta underkategorier. Resultatet visade att sjukdomen upplevdes ge fysiska och psykiska konsekvenser. Sjukdomens svårighetsgrad varierade men gemensamt var upplevelsen av stora begränsningar. Begränsningarna ledde ofta till frustration, ensamhet och ett behov att omvärdera sin identitet. Personer med myalgisk encefalomyelit/kroniskt trötthetssyndrom upplevde en oförståelse och okunskap hos omgivningen och inom vården. Resultatet visade också en stor variation av känslor rörande acceptans och återhämtning bland personerna. Konklusion: För att vården ska förbättras och tillvaron förändras för personer som lever med ME/CFS behövs mer kunskap och förståelse kring sjukdomen. / Background: The cause of myalgic encephalomyelitis/chronic fatigue syndrome is not completely understood, but usually the disease debuts after an infection, exposure to environmental toxins or during stress and major life events. The symptoms are many and varies in severity. It is difficult to diagnose the disease and there are no specific biomarkers for diagnosis. The disease is still unexplored which makes it hard for nurses to help these people in a person-centered way. Purpose/Aim: The purpose was to highlight experiences of living with myalgic encephalomyelitis/chronic fatigue syndrome. Method: The study was designed as a general literature study, where ten result articles were used. Analysis of the result articles were done according to Popeneo et al. (2021). Results: In the results, three main categories were identified, followed by eight subcategories. The results showed that the disease was perceived to give physical and psychological consequences. The degree of severity of the disease thus varied, but in general was the experience of major limitations. The limitations often led to frustration, loneliness and a need for re-evaluate one’s identity. Strategies for coping and an everyday planning was common. The lack of understanding and ignorance about the disease, created an obstacle between the healthcare and the patients. In addition, the results showed that feelings about recovery and acceptance varied. Conclusion: In order for care to improve and life to change for people living with ME/CFS, more knowledge and understanding about the disease is needed.