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 addressed to Scotlands 12 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 Orkney 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 Orkney’s share of the allocated annual £4.5 million.
The answer (Freedom of Information Request 202526/445) was hardly enlightening and the funds released will not be transformational given that the provision is due to cover long-COVID, “myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS) and similar conditions”.
- NHS Orkney has established some dedicated resources and integrated services into primary and
secondary care services. Following initial assessment and investigation in primary care, referrals
are triaged by secondary care physician consultants and physiotherapy.
The plan is to continue all current services and focus on integration with services for ME and
CFS, including collaboration with larger mainland boards to offer the benefits of scale to our rural
and remote population.
- NHS Orkney’s annual share is £14,716.
