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.

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.