Feasibility study for a community based intervention for adults with severe chronic fatigue syndrome/ME

Background: Chronic Fatigue Syndrome/ME (CFS/ME) is characterised by debilitating fatigue with many bedbound patients. The study aims were: to determine whether a new intervention could be successfully delivered; to collect quantitative outcome data to guide the design of future studies; to explore qualitatively the experience of patients, carers and clinicians. Methods: Mixed-methods feasibility study with qualitative and quantitative evaluation. Participants: 12 UK patients who were housebound with severe CFS/ME. Intervention: Based on recovery skills identified through a 2.5 year Patient and Public Involvement development process involving individuals with first-hand experience of recovery from CFS/ME, as well as current patients and clinicians. The resulting one year intervention, delivered by a multi-disciplinary team, included domiciliary therapy visits and optional peer support group. Quantitative outcome measures: Patient-reported and therapist-reported outcome measures (including fatigue, physical function, anxiety, depression and other variables) and electronic activity measurement. Results: The study recruited and engaged twelve participants with no serious adverse events or dropouts. At end of intervention, 5/12 participants had improved in fatigue, physical function. Group mean scores improved overall for fatigue (Chalder fatigue scale), physical function (activity and physical function scale) and anxiety. Qualitative interviews suggested that the intervention was acceptable to patients, whilst also highlighting suggestions for improvement. Participants will be followed up for a further year to find out if improvements are sustained. Conclusion: This is the largest study ever conducted in severe CFS/ME and shows significant recovery suggesting further studies are indicated. Treatment is uniquely based on a patient inspired intervention.