Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a rare disease with no known etiology. It affects 0.4% of the population, 25% which experience severe and very categories; these are defined as being wheelchair-, house-, bed-bound. Currently, absence biomarkers necessitates diagnosis by exclusion, can create stigma around illness. Very little research has been conducted partly categories CFS/ME. This in part because significant health burdens experienced people difficulties engaging healthcare provision it currently delivered. qualitative study explores experiences five individuals living CFS/ME its most form through semi-structured interviews. A six-phase themed analysis was performed using interview transcripts, included identifying, analysing, reporting patterns amongst Inductive performed, coding data without trying to fit into pre-existing framework or pre-conception, allowing personal be expressed freely. Overarching themes ‘Lived Experience’, ‘Challenges daily life’, ‘Management condition’ were identified. These highlight factors that place at greater risk experiencing more presentation hoped insights will allow clinical communities engage effectively severely affected population.