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 Lothian 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 Lothian’s share of the allocated annual £4.5 million.
The answer (Freedom of Information Request – Ref 10702) is fuller than most but the involvement of psychologists to aid “… addressing barriers to effective change…” is worrysome.
- The NHS Lothian ME/CFS service provides a coordinated and individualised Multi-Disciplinary approach, supporting individuals in optimising the management of their ME/CFS, improve functioning, support mental health and emotional wellbeing, and enhance quality of life. This includes providing patients with self-management tools in relation to the physical, cognitive, and emotional impact of this long-term condition.
This can involve activity management strategies to help stabilise energy levels, including establishing baseline levels of activity which a person can manage without escalating their symptoms. This does not include Graded Exercise Therapy which is not recommended for those with ME/CFS (NICE 2021).
Psychologists may support individuals with their in (sic) addressing barriers to effective change through psychotherapeutic strategies with people with ME/CFS, where appropriate, whilst ensuring that service users with ME/CFS are involved throughout in decisions relating to their physical, sexual, emotional and social care needs. They also may explore the loss or change in role and identity which can be experienced.
Physiotherapists with a specialist knowledge of ME/CFS support patients with energy management; establish an individual activity pattern within their current energy limits which minimises their symptoms; advise on the management of flare-ups and relapses and address difficulties related to reduced physical activity or mobility. Where appropriate they will also advise on the introduction of gentle movement which may include gentle exercises or stretches to maintain or improve functioning and manage pain when this is a goal of the person with ME/CFS.
The additional funding has allowed the ME/CFS team to expand our Multi-Disciplinary team and skill mix to include Occupational Therapists. As highlighted in the NICE guidelines, Occupational Therapists can provide support to patients with energy management, activities of daily living, and provide advice on home and workplace aids, adaptations and equipment. This is of particular benefit to those patients who experience more severe levels of fatigue.
The ME/CFS service also works closely with the NHS Lothian Work Support Service to support people with work, education and training, again, in line with the NICE guidelines.
We have also recently included a Rehabilitation Medicine Consultant to the ME/CFS and Long Covid Services; a medical Multi-Disciplinary team meeting is therefore now regularly held to facilitate collaborative working and liaison across the services working with people with ME/CFS, including the ME/CFS team, Speech and Language Therapy, the Lothian Work Support Service and Rehabilitation Medicine. The aim is to ensure that tailored and coordinated care is provided to people accessing the service.
Individuals have the option to attend in person (at the Astley Ainslie Hospital, online via the Near Me platform, or by telephone).The ME CFS service also offers an online group intervention. This range of options aims to provide the most appropriate and accessible form of contact with the service, including for those people with more severe ME/CFS. - The NHS Lothian share of Scottish Government allocation is £676,576.
