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 Dumfries and Galloway 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 Dumfries and Galloway’s share of the allocated annual £4.5 million.
The answer (Freedom of Information Request – Ref 25-528) indicates that ME/CFS specific support appears to be limited.
- NHS Dumfries & Galloway have utilised funding to develop a referral pathway into Community Rehabilitation services, increasing the provision of Occupational Therapy and Physiotherapy for people referred with Long covid/ME and an energy limiting conditions. The pathway is multi-disciplinary with involvement from psychology and Rehabilitation Doctors.
Staff training has been undertaken with more whole system training to ensure best practise in line with NICE NG 206 guideline.
Referral guidelines for primary care on DGrefhelp have been developed and will be updated will be updated in the next 4 weeks for primary care.
NHS D&G are working with Chest, Heart and Stroke Scotland on development of a Self-Management programme.
There is a project team in place with an improvement plan, which is reviewed and will continue to evolve over the next 2 years. Service user feedback is captured and will continue to be sought as part of the improvement plan. - Scottish Government have earmarked 2.96% share equating to £133,076 funding to NHS Dumfries and Galloway, however, it must be noted that this is in relation to Long COVID, ME/CFS and other similar conditions and not solely for ME/CFS.
