The inexactitude of how the Scottish Government’s £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS led Rhoda Grant MSP (with assistance from ME Research UK) to seek more details via Freedom of Information requests from the Boards in her constituency – Highland, Western Isles, Orkney and Shetland NHS Boards.
ME Research UK has built upon these and sought similar information from the remaining Scottish Boards to discover what provision they will be making and whether they will be adhering to NICE principles of care and support.
ME Research UK was concerned that the September 2025 funding announcement failed to mention a commitment to ensure NICE compliant ME/CFS options given the dire lack of knowledge and NHS services currently available for those with ME/CFS – as evidenced by the Scottish Government’s own report. When Ben Macpherson MSP tabled a question to enquire how the funding proposal of £4.5m, covering a number of areas, would impact ME/CFS – especially in implementation of the ME/CFS NICE guideline – now Scotland’s “the default clinical guidance on ME/CFS“ – there was no mention other than “It is expected that NHS boards will develop support based on their understanding of local population need and synergies with existing local service provision.”
ME Research UK therefore asked
Considering the Scottish Government’s announcement on ‘Funding long COVID services’ (which encompasses ME/CFS services –
- How does NHS Lanarkshire intend tailoring appropriate and NICE NG206 compliant services for those affected by ME/CFS and how will it ensure services meet best practice as benchmarked by NICE – especially for those severely affected?
- How much is NHS Lanarkshire’s share of the allocated annual £4.5 million.
The answer (Freedom of Information Request – Ref 10702) reveals that the Board’s efforts will focus on an Energy-Limiting Conditions Team which will cover Long COVID, ME/CFS, fibromyalgia, and other chronic fatigue-related illnesses.
- Currently, there are no specific services for myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) in Lanarkshire. For individuals with ME or CFS, NHS Lanarkshire provides a multi-disciplinary approach. Those identified by their GP are supported by a team comprising professionals from paediatrics, psychology, occupational therapy, physiotherapy and dietetics. This single pathway ensures a holistic approach where individual assessments inform goal setting and tailored interventions.
Consequently, NHS Lanarkshire is working to establish an Energy-Limiting Conditions Team (ELC) that will serve patients with Myalgic Encephalomyelitis (ME), chronic fatigue syndrome (CFS), and similar conditions, and will also be open to referrals from other healthcare providers.
An ELC team would specialise in providing a dedicated service for individuals with moderate to very severe energy-limiting conditions, including Long COVID, ME/CFS, fibromyalgia, and other chronic fatigue-related illnesses. The service should aim to improve quality of life through fatigue management, education, and interdisciplinary expert support.
The specialised staff would support mainstream pathways through education to promote self-management for mild to moderate cases. It would also provide clinical input on managing more challenging aspects of these conditions. The team also plans to develop robust links with other specialist services, social care and the third sector and ensure collaborative working with GPs as the primary care provider.
The relevant resource papers will be submitted in due course to senior health board leaders, partners and appropriate forums for discussion and agreement. - Following the Scottish Government’s announcement of a £4.5 million fund for health boards, NHS Lanarkshire has been allocated its share, which is 12.48% or £561,378 annually.
