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 Ayrshire and Arran 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 Ayrshire and Arran’s share of the allocated annual £4.5 million.
The answer (Freedom of Information Request – Ref 0869-2025) is the most thoughtful recived but hardly inspiring in its vision.
- Allied Health Profession Response:
We are going to take time to scope the local needs of people with ME/CFS as well as make links with local and national organisations. We acknowledge that the knowledge and experience gained through Long Covid may not be sufficient and are happy to invest in the additional training required to upskill, and to look to meet the needs of those with severe symptoms.
We also acknowledge, in line with the ME/CFS recommendations that additional medical support should be available and have built in two sessions per week for a GP with a special interest to support assessment/ triage and pathway management, if recruitment is successful.
Acute Services Response:
This will be carried out through a tailored approach after screening for co-morbidities and other conditions that can mimic ME/CFS, for example, long covid, and utilising existing services including psychological support, cognitive behavioural therapy, physiotherapy, dietician, pain management team, patient education and self-management, patient education, carer support, occupational health and staff support, staff well-being hub phased return to work, and strategies to ensure a multi-disciplinary patient-centred approach.
Paediatric services care for children and young people up to the age of 16. The service provides patient centred care and appropriate medical assessment and investigations for young people who may have a diagnosis of ME/CFS involving physiotherapy, occupational therapy and dietetic services as needed and liaising with Education to inform educational plans for young people. - A total of £375,000 to include current staffing that existed for Long Covid.
