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 Borders 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 Borders’ share of the allocated annual £4.5 million.
The answer (Freedom of Information Request – Ref 545-2526) is very-much thereapy centred.
- NHS Borders is supporting individuals affected by Long COVID and other energy limiting conditions, including Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The service is designed to promote self-management of symptoms and will be aligned with the principles and recommendations set out in NICE Guideline NG206.
Through therapy-led, client-centred interventions, the service supports individuals in managing fatigue, cognitive impairment, sensory sensitivities, and functional limitations. This approach is designed to empower individuals to manage their condition in a manner that honours their lived experience and promotes autonomy.
The medical oversight remains with the patients referring GP, who retains responsibility for clinical decision-making. The service therefore works in partnership with Primary Care and will refer to appropriate specialties as required, ensuring that patients have access to further investigation or specialist input when clinically indicated.
NHS Borders is hopeful, going forward, about sharing services with NHS Lothian, which would allow for pooling of expertise, resources, and learning from existing pathways. This collaboration would strengthen support for those who are severely affected by ME/CFS by improving access to specialist input that reflect best practice.
The service will be benchmarked against NICE best practice through ongoing evaluation, patient feedback, and clinical outcomes monitoring - NHS Borders has received £99k as part of the Scottish Government funding.
