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 Forth Valley 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 Forth Valley’s share of the allocated annual £4.5 million.
The answer (Freedom of Information Request – Ref 0009802) indicates that ME/CFS support will be located within an expanded long-COVID service and in collaboration with neighbouring Boards.
- NHS Forth Valley is committed to delivering services for individuals affected by ME/CFS that are compliant with NICE guideline NG206 and tailored to meet varying levels of need, including those who are severely affected. We are currently expanding our Long Covid service to include ME/CFS and Postural Tachycardia Syndrome (PoTS). This multidisciplinary service provides holistic care, with a strong emphasis on fatigue management that addresses physical, cognitive, and emotional dimensions.
We offer:- Individualised face-to-face (F2F) first appointments, allowing for comprehensive assessment and personalised care planning.
- Flexible follow-up options, including F2F, Near Me (video), or telephone consultations, based on the patient’s condition, preferences, and accessibility needs.
- Tailored pacing and energy management strategies, in line with NICE NG206, to support stabilisation and gradual improvement without overexertion.
To further strengthen support for complex cases, we are actively exploring the creation of a regional centre in collaboration with NHS Lothian, NHS Borders, and NHS Fife.
This initiative will: - Expand access to a broader range of specialist staff and resources.
- Enhance continuity of care for patients with severe and complex presentations.
- Provide educational opportunities for local staff across all four boards, improving sustainability and clinical expertise in community-based services.
These developments reflect our commitment to ensuring that services for ME/CFS are not only NICE-compliant but also responsive to the needs of those most severely affected.
- NHS Forth Valley were (sic) allocated £246,390.
