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 Shetland 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 Shetland’s share of the allocated annual £4.5 million.
The answer (Freedom of Information Request – Ref FOI/1458) was well outwith the time limits laid down for answering an FoI request (having been made on 5th November) and the answer perfunctory.
- NHS Shetland intends to participate in the development of a regional ME/CFS & Long COVID service model with NHS Highland and other Northern Isles partners. Evidence shows the model is explicitly aligned with NICE NG206, uses remote specialist delivery, and will follow national best-practice frameworks.
- £21,466 per year, as set out in the Scottish Governments formal allocation letter dated 25 September 2025.
