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 Highlands 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 Highland’s share of the allocated annual £4.5 million.
The answer (Freedom of Information Request – Ref 26441) was full and encouraging.
- NHS Highland will deliver a Post Infection Service covering Long COVID, ME/CFS, PTLDS (Post-Treatment Lyme Disease Syndrome), and similar conditions. This service is explicitly aligned with NICE NG206 (ME/CFS) and NG188 (Long COVID) as well as the NSS Long COVID Strategic Network best-practice features.
Key elements will include:
- Doctor-led multidisciplinary model: A GP with a special interest and consultant sessions will provide medical oversight, ensuring robust assessment and diagnosis, as recommended by NICE.
- Tailored care for ME/CFS: The service will co-create pathways with lived experience representatives and experts to ensure energy management, pacing, and psychological support are embedded, consistent with NG206.
- Support for severely affected patients: Virtual options will ensure accessibility for housebound patients and remote monitoring (e.g., NASA Lean Test for POTS) will be available.
- Multidisciplinary team: Occupational therapy, physiotherapy, clinical psychology, and medical input will be core, with additional paediatric provision scoped for 2026/27.
- Outcome tracking and quality assurance: Use of PROMs (e.g., DePaul PEM score, C19-YRS), functional scales, and patient experience surveys to monitor compliance with NICE standards and continuous improvement.
- Best practice benchmarking: The model reflects NICE principles—coordinated MDT care, continuity, and patient-centred planning—and will be reviewed through reporting and engagement with the national strategic network.
2. NHS Highland’s allocation is £300,000 per annum
