Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) services in Scotland: health board survey - updated analysis

2. Executive Summary

This report analyses survey responses from the 14 territorial NHS Boards in Scotland to understand what Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) services are being provided and how services are embedding the updated National Institute for Health and Care Excellence (NICE) guidance on the diagnosis and treatment of ME/CFS. The aims of this report are to understand the barriers and opportunities to implementing the updated NICE guidelines and how NHS Boards can be best supported to create ME/CFS specific care in the future.

The report is based on updated responses to a survey issued by Scottish Government to NHS Boards scoping ME/CFS service provision, first commissioned in Autumn 2022. Ten NHS Boards initially participated in the survey. Following publication of the analysis, the remaining four territorial NHS Boards voluntarily submitted details of services in their area. In Spring 2024, the Scottish Government approached all NHS Boards to submit any relevant updates to returns to capture any recent developments. Based on these updated returns, this report provides an integrated picture of provision for ME/CFS across Scotland as of 2024, and some commentary on changes over time in the design of ME/CFS support in Scotland.

Survey responses highlighted that provision for ME/CFS varies greatly across Scotland and ranges from generalist to specialist support by staff trained in ME/CFS. Only two NHS Boards have a specific specialist ME/CFS pathway for patients in their area and, at the time of this survey, only one of these pathways was active. Most NHS Boards agreed there are potential synergies between a specialist ME/CFS service and pathways for other long-term conditions. There has also been some divergence over time between NHS Boards, with some NHS Boards integrating referral pathways and management options for people who experience conditions with similar symptoms to ME/CFS.

Since 2022, some NHS Boards described new areas of service development, knowledge sharing across disciplines, and a broadening of onward referral routes to manage and treat ME/CFS and co-existing conditions. Overall, NHS Boards reported a small increase in staff awareness of the updated NICE guideline, specifically around Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) for people with ME/CFS. New online or digital self-management initiatives, close working with long COVID services, and in some cases, new Allied Health Professional resource were reported. NHS Boards articulated ongoing priorities around increasing staff capacity to participate in education and training about ME/CFS and the need for greater investment in research to understand ME/CFS symptoms and treatment.

Despite different geographical contexts, service models and future intentions for service development, there were common challenges voiced by NHS Boards in providing ME/CFS services, specifically, resourcing and funding constraints, outdated views about ME/CFS, and coping with legacy waiting lists. Compared to the 2022 survey, new issues emerging for NHS Boards were around recruiting staff with specialist skills and training capacity, an increase in demand for services and sustainability of funding. The results of this survey highlight a willingness of NHS Boards to develop ME/CFS specific treatment and support, yet there is an acknowledgement that investment in research to understand ME/CFS symptoms and treatment, sustainable funding and increased training capacity will need to be addressed first.