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 has 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 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.”
Ms Grant therefore asked
Considering the Scottish Government’s announcement on ‘Funding long COVID services’ (which encompasses ME/CFS services –
- How does NHS Western Isles 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 Western Isles’ share of the allocated annual £4.5 million.
The answer (Freedom of Information Request – Ref 666-2025) was not hugely enlightening with the Bord receiving limited funding.
- NHSWI are working with several other health board areas to develop a model of care for patients with long COVID/ME/CFS collectively pooling resource and expertise. The developing service will be made up of a multidisciplinary team with regional and local personnel and resources. We have taken all elements of NICE NG206 into consideration to ensure that we cover physical, functional, psychological and social aspects of their care into account including supporting those with more complex needs. In addition, several local guidelines have been developed, or are in development, to ensure that specific complications such as orthostatic dysfunction can be managed effectively. The evidence base for all the above will ensure appropriate therapies only are used in patient enagement.
- NHSWI share for 25/26 is £29,138
