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 Tayside 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 Tayside’s share of the allocated annual £4.5 million.
The answer (Freedom of Information Request – Ref IGTFOISA25944) indicates that ME/CFS support will be located within an expanded long-COVID service.
- NHS Tayside has adopted an integrated, person-centred model for managing Long Covid and proposes to expand this model, enhancing our AHP led model of symptom and condition management to include Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and other energy-limiting, post-viral conditions.
This approach enables individuals to recognise and self-manage the symptoms and impacting functional limitations associated with their long-term condition, enabling the maximisation of their quality of life and societal programmes through a rehab focused approach.
This service would offer the specialist and targeted models of intervention required by individuals to enable them to then engage with ongoing community-based resources and universal offers. The service will work alongside the ongoing development of health and wellbeing hubs with local leisure provides to encourage joint working and shared skills to maximise long term positive self-management behaviours.
This approach is aligned with the Scottish Government’s Long-Term Conditions Strategic Framework consultation document, the ME/CFS Oversight Group Report, the Scottish renewal framework and value-based healthcare. It also reflects the guidance from NICE NG188 (Long Covid) and NG206 (ME/CFS), emphasising early access, coordinated multidisciplinary care, and holistic, needs-led planning.
The GP remains the responsible medical officer for these patients and the model builds in GP capacity for Multi-Disciplinary Teams weekly discussions. The AHP rehabilitation and symptom management service will be embedded in Health and Social Care Partnerships structures and led by Allied Health Professionals, with secondary care advice and treatment where applicable using well embedded models of consultant connect MDT support.
Optimising the use of digital resources the service would continue and further expand the links with online self-management support, near me, digital tools, NHS Inform, Chest Heart & Stroke Scotland (CHSS) Advice Line, and third-sector collaboration. It provides symptom and function-based access rather than relying solely on a formal diagnosis.
Key elements of the service model include:
– Primary care-led initial investigations and management planning.
– Care co-ordination and support provided by the AHP (Allied health Practioner) service
– Weekly MDTs (Multi-Disciplinary Teams) for case discussion
– Supported self-management and early intervention
– The use of digital self-management programmes may enable regional working and support and planning discussions are in place across the North region.
– Multidisciplinary assessment and individualised rehabilitation
– Group education and rehabilitation programmes
– Peer and lived experience support
– Integration of psychology and spiritual care services
– Support for vocational rehabilitation and return to work.
This inclusive model is designed to offer equitable access to care regardless of diagnosis and enables tailored support across different severity levels of fatigue-related conditions. The Tayside Long Covid rehab model received positive feedback from the population and offered a responsive service for the often relapsing, remitting nature of the individuals’ needs.
The service proposal is directed at adults but discussions have been held with Paediatric AHP managers and agreed that where required support and advice can be offered and peer development and networking can be supported. - Financial Commitment – £346,825
