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

3. Introduction

Myalgic Encephalomyelitis (ME), also referred to as Chronic Fatigue Syndrome (CFS), is a long-term, chronic condition with a range of symptoms, the most common of which is extreme tiredness. Other symptoms may include pain, brain fog, and sensory overwhelm as well as sleep disturbances and post-exertional malaise after activity. ME/CFS is more common in women, usually developing between mid-20s to 40s, although it can affect anyone, including children. The causes of ME/CFS are largely unknown, however it has been suggested that viral or bacterial infections, immune system regulation, hormonal imbalance, or family genetics may be triggers. Due to the invisibility of this condition, ME/CFS is often considered a hidden disability. Treatment is usually patient-centred depending on symptoms and can include energy management techniques, medicine, and lifestyle changes.

In October 2021, the National Institute for Health and Care Excellence (NICE) updated their clinical guidance for diagnosing and managing ME/CFS based on evidence reviewed before the COVID-19 pandemic. The guidelines are aimed at health and social care professionals, commissioners, people living with ME/CFS, their carers/families, and the public. The new guidelines provide recommendations on symptom management, specialist and multi-disciplinary care, frequency and structure of review, and care for people with severe or very severe ME/CFS as well as children and young people. The changes made in the recommendations by NICE include the removal of Graded Exercise Therapy (GET) as a suggested treatment and a repurposing of Cognitive Behavioural Therapy (CBT) to become a support rather than cure. Across third sector ME/CFS organisations and those with lived experience, the changes have been welcomed. Many feel that previously these therapies undermined their lived experience with this condition and the updated guidance began to address the negative and stigmatising interactions amongst those clinicians who are less willing to treat ME/CFS as a recognised neurological condition. However, some clinical and other professional groups have disputed the new NICE guidelines, suggesting that the new recommendations regarding GET and CBT undermine the positive impacts that these types of intervention may potentially have for people with ME/CFS.

The Scottish Government commissioned a review in December 2021, published in July 2022, outlining stakeholders’ views and priorities for implementing the updated NICE guideline in Scotland as well as highlighting areas for improvement in established support pathways for people with ME/CFS. Clinicians, third sector ME/CFS organisations, and people living with ME/CFS were asked about their views on the changes made in the NICE guidelines. Among the overall positive reflections about the NICE guidelines in this review, many believed that the removal of GET was a “massive step forward” for people living with ME/CFS and that the repurposing of CBT as a support rather than cure was welcome. In addition, many endorsed the recognition of differences between severities of ME/CFS as well as children and young people living with this condition. Overall, stakeholders “welcomed the guidance’s improved diagnostic criteria and aspirations for specialist care.”

The National Clinical Director and Interim Director wrote to NHS Boards on 14 June 2022 to raise awareness of key changes in practice within the updated NICE guidelines on managing and diagnosing ME/CFS. Subsequently, the former Cabinet Secretary for Health and Social care met with MEAction on 21 September 2022 to discuss ME/CFS care in Scotland and awareness of the condition amongst clinicians. The survey analysed in this report emerged from an action point from the meeting: to map services for ME/CFS, to identify services or pathways which work well, and consider how these might be replicated.

This survey was first commissioned on 3 October 2022. 11 responses were received from ten NHS Boards^[1] and the results were published on 16 May 2023. This report was welcomed by stakeholders as useful context of ME/CFS service delivery, plans for future service development, and barriers and opportunities to implementing the NICE guideline. Following publication of the report, four NHS Boards who did not initially participate in the survey voluntarily submitted responses.

It was agreed within Scottish Government that the most appropriate way to publish these new returns was as part of an integrated, updated review of ME/CFS services. Therefore, in July 2024, a request was sent to all NHS Boards who had participated in the original survey to give them the opportunity to provide any update on their original survey response, to capture any changes to services and provision since Autumn 2022, and to present these in a new aggregated analysis.

This report analyses survey responses from all 14 territorial NHS Boards in Scotland to provide an up-to-date understanding of how services are embedding the NICE ME/CFS treatment and support guidelines. As with the previous report, it seeks to understand:

• current service provision,
• awareness of the updated NICE guidelines and how they have been implemented so far,
• barriers and opportunities to implementing the guidelines,
• where support is needed to embed the updated guidelines.

A review ME/CFS provision has also been undertaken by the British Association of Clinicians in ME/CFS (BACME). The latest BACME survey report published in October 2023 provides a snapshot of UK NHS specialist ME/CFS services from the perspective of registered specialist services, which further contextualises service development, constraints, and training and education in ME/CFS and care at a UK level. Comparisons between results from this Scotland-specific survey, which looks at specialist and generalist services for people with ME/CFS, and an overview of specialist ME/CFS services in the UK by BACME are considered below.