Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Services in Scotland: Findings from an analysis of surveys issued to NHS Boards in Autumn 2022

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.

The 2002 Scotland's Chief Medical Officer Short Life Working Group made recommendations to establish ME/CFS specific services that had not yet been actualised. A further 26 recommendations were then made in 2010 by the Scottish Health Network assessment report to ensure better support for people with ME/CFS. In 2020, the ME-CFS healthcare needs assessment: Briefing (published by the Scottish Public Health Network) reemphasised the previous recommendations and acknowledged ME/CFS as a neurological condition, advising that the delivery of recommendations should take account of the Scottish Government's Neurological Care and Support Framework.

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 general 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 & 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 commissioned on 3 October 2022 and a Scottish Parliamentary debate, held on 3 February 2023, noted the intention to publish this analysis.

This report analyses survey responses from ten NHS Health Boards in Scotland to understand how services are embedding the updated NICE ME/CFS treatment and support guidelines. In particular, this report 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.