Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) services in Scotland: health board survey - updated analysis

5. Results

This section summarises the results of the survey based on the responses of 14 NHS Boards:

• Seven NHS Board updated their 2022 response^[2]
• Three NHS Boards reported no updates^[3]
• Four NHS Boards provided a response for the first time^[4]

Since all 14 NHS Boards responded to the request, all returns contained information relevant to ME/CFS service provision in 2024.

5.1 NHS Board pathway from referral to support by service

Overall, ME/CFS support services were delivered in a variety of ways: by generalist services within primary and secondary care, specialist staff with ME/CFS training, services that provided support for long-term conditions with similar symptoms (such as long COVID or chronic pain), or third sector organisations.

Table 1 shows, in alphabetical order, where NHS Boards receive their ME/CFS referrals from. Table 2 shows what primary support is offered to people with ME/CFS by each NHS Board. Table 3 shows what secondary support is offered by NHS Boards if there is no specialist service for ME/CFS or similar long-term condition management service available.

(Table 1) Where NHS Boards receive their ME/CFS referrals from

NHS Board: NHS Ayrshire and Arran

Referrals from: GPs and self-referral

NHS Board: NHS Borders

Referrals from: No response

NHS Board: NHS Dumfries and Galloway

Referrals from: GPs and Rehabilitation Consultants

NHS Board: NHS Fife

Referrals from: GPs and Secondary Care Consultants

NHS Board: NHS Forth Valley

Referrals from: GPs

NHS Board: NHS Grampian

Referrals from: GPs and Secondary Care Consultants

NHS Board: NHS Greater Glasgow and Clyde

Referrals from: GPs and Secondary Care Consultants

NHS Board: NHS Highland

Referrals from: GPs

NHS Board: NHS Lanarkshire

Referrals from: Primary Care

NHS Board: NHS Lothian

Referrals from: GPs and Secondary Care Consultants

NHS Board: NHS Orkney

Referrals from: GPs

NHS Board: NHS Shetland

Referrals from: “usual route”

NHS Board: NHS Tayside

Referrals from: GPs

NHS Board: NHS Western Isles

Referrals from: GPs

(Table 2) What primary support is offered to people with ME/CFS by each NHS Board

NHS Board: NHS Ayrshire and Arran

ME/CFS primary support offered: Neurological Rehabilitation Service

NHS Board: NHS Borders

ME/CFS primary support offered: No specialist or related ME/CFS service

NHS Board: NHS Dumfries and Galloway

ME/CFS primary support offered: Community Rehabilitation Service

NHS Board: NHS Fife

ME/CFS primary support offered: Clinical Nurse Specialist Service in ME/CFS (primary care)^[5]

NHS Board: NHS Forth Valley

ME/CFS primary support offered: No specialist or related ME/CFS service

NHS Board: NHS Grampian

ME/CFS primary support offered: No specialist or related ME/CFS service

NHS Board: NHS Greater Glasgow and Clyde

ME/CFS primary support offered: Occupational Therapist within Centre for Integrative Care supporting people with ME/CFS

NHS Board: NHS Highland

ME/CFS primary support offered: No specialist or related ME/CFS service

NHS Board: NHS Lanarkshire

ME/CFS primary support offered: No specialist or related ME/CFS service^[6]

NHS Board: NHS Lothian

ME/CFS primary support offered: Multi-disciplinary ME/CFS service including Specialist Physiotherapist (unfunded), Occupational Therapist (12-month fixed term funding via long COVID resource) and Clinical and Counselling Psychologists

NHS Board: NHS Orkney

ME/CFS primary support offered: Funded Physiotherapist for people with long COVID/ME (capacity limited)

NHS Board: NHS Shetland

ME/CFS primary support offered: No specialist or related ME/CFS service

NHS Board: NHS Tayside

ME/CFS primary support offered: No specialist or related ME/CFS service

NHS Board: NHS Western Isles

ME/CFS primary support offered: No specialist or related ME/CFS service

(Table 3) What secondary support is offered by NHS Boards if there is no specialist service for ME/CFS or similar long-term condition management service available

NHS Board: NHS Ayrshire and Arran

ME/CFS secondary support offered: Full multi-disciplinary team including Rehabilitation Medicine Consultants, Allied Health Professionals and Neuropsychology within Neurological Rehabilitation Service

NHS Board: NHS Borders

ME/CFS secondary support offered: Most appropriate clinical services (Physiotherapy, Occupational Therapy, Pain Management Service, GPs with special interest in ME/CFS) and third sector support (Live Borders for physical and mental wellbeing)

NHS Board: NHS Dumfries and Galloway

ME/CFS secondary support offered: Active Lives, third sector organisations, clinical services (Occupational Therapy, Physiotherapy, Nursing, Dietetics, Psychology Services, Mental Health Occupational Therapy and Occupational Health Therapy), GP and Medical Consultants

NHS Board: NHS Fife

ME/CFS secondary support offered: Third sector agencies (Action for ME, ME Association, Pain Association Scotland) and a range of clinical services based on individual need: Psychology, Neurology, Pain Clinic, Gastroenterology, Psychiatry, Medicine, Physiotherapy, Social Work, Occupational Therapy

NHS Board: NHS Forth Valley

ME/CFS secondary support offered: Primary Care and Secondary Care (specific areas such as Paediatrics and Physiotherapy)

NHS Board: NHS Grampian

ME/CFS secondary support offered: Community Occupational Therapy and Primary Care Psychology. If relevant, Mental Health Psychiatry, Clinical Psychology, Occupational Therapy, Physiotherapy, Allied Health Professions, Community Nursing and Social Work.

For children and young people: Paediatric Physiotherapy, Occupational Therapy, Paediatric Psychology (via Child and Adolescent Mental Health Services (CAMHS)) and Paediatric specialities such as Paediatrics and Gastroenterology

NHS Board: NHS Greater Glasgow and Clyde

ME/CFS secondary support offered: 1^[7] The Lightning Process for people with ME/CFS and long COVID, NHS GGC Spiritual Care Listening Service, Online Yoga, Orthotics, Westmarc Wheelchair Services, Community Rehabilitation, Chaplaincy Listening Service, Community Connectors, Musculo-skeletal Physiotherapists, Occupational Health, Online resources (ALISS, Moving into Balance, IMPARTS), Andrew Weil Centre for Integrative Medicine, third sector (Alliance, Citizens Advice, Cycling for Disabled, Macmillan Cancer Support) and NHSGGC Allied Health Professional long COVID team

NHS Board: NHS Highland

ME/CFS secondary support offered: Psychology, Physiotherapy, Paediatrics, Rheumatology, Neurology, Mental Health, General medicine, Respiratory, Endocrinology, Cardiology

NHS Board: NHS Lanarkshire

ME/CFS secondary support offered: Primary Care (Occupational Therapists) and Secondary Care (specialist referrals to Paediatrics), COVID Rehabilitation Pathway, Community Stroke and Neurological Pathway, Community Brain Injury Pathway (Allied Health Professional and Psychology staff). Rheumatology, Neurology, Cardiology, Mental Health, Children and Young People’s services. Third Sector organisations such as Voluntary Action North Lanarkshire and Voluntary Action South Lanarkshire, and Leisure Services

NHS Board: NHS Lothian

ME/CFS secondary support offered: Physiotherapy, Occupational Therapy, Pain Management Service, Community Mental Health Team, Community Nursing, third sector partners such as Thistle Foundation, Action for ME and the ME Association, Neurology Services and Social Services. Digital Services are also offered (Silvercloud, cCBT, Sleepio and Daylight)

NHS Board: NHS Orkney

ME/CFS secondary support offered: Outpatient Physiotherapy and Psychological Therapy

NHS Board: NHS Shetland

ME/CFS secondary support offered: Support from GPs, Allied Nurse Practitioners, Physiotherapy, Community Mental Health Team (Psychologists), and Occupational Therapists and third sector “Mind your Head” for mental health support

NHS Board: NHS Tayside

ME/CFS secondary support offered: Secondary Care Services (Rheumatology, Neurology, Respiratory, Psychiatry, and Paediatrics)

NHS Board: NHS Western Isles

ME/CFS secondary support offered: Support of symptoms from Primary Care (GP, Physiotherapy, Occupational Therapy, Specialised Respiratory Assessment and Management service), online resources from the NHS Western Isles Central Coordinator, and Third Sector organisations such as Pain Association Scotland

The above tables show that only two NHS Boards had a specific ME/CFS pathway for patients in their area (NHS Fife and NHS Lothian). At the time of this survey, only one of these pathways (NHS Lothian) was active; a ‘pan-Lothian’ specialist secondary care level service, available to those aged 16 and over. In NHS Fife, a primary case-based specialist service for those aged 18 and over has been suspended since April 2023. This follows the loss of the Clinical Nurse Specialist who led the service and ongoing difficulties recruiting for this role.

Four other NHS Boards cited staff trained in ME/CFS support as the primary service offered to people with ME/CFS (NHS Ayrshire and Arran, NHS Dumfries and Galloway, NHS Greater Glasgow and Clyde, NHS Orkney). All other NHS Boards who responded to the survey reported that people with ME/CFS were managed through primary or secondary care, third sector organisations, or received support that was integrated with other long-term condition management pathways. Some practitioners in these pathways were reported to have received training in treating and managing symptoms similar to the approaches advocated in the new ME/CFS clinical guidance.

The responses show that people with ME/CFS are identified through symptomatic assessments (bloods and further investigation as required) (NHS Borders, NHS Lothian), or guidelines including NICE NG206 (NHS Shetland) and CFS guideline criteria (NHS Grampian). Routes of identification include via a senior doctor through Active Clinical Referral Triage (ACRT) (NHS Greater Glasgow and Clyde), Rehabilitation Consultant (NHS Dumfries and Galloway), GP (NHS Western Isles, NHS Dumfries and Galloway), or other primary care services (NHS Lanarkshire, NHS Tayside).

One NHS Board highlighted that while patients are normally identified through primary care services or self-referral, several have been initiated through Members of the Scottish Parliament enquiries particularly in response to long COVID service development (NHS Ayrshire and Arran). Two NHS Boards noted that ME/CFS may co-exist with other long-term conditions and co-morbidities. Thus, ME/CFS may emerge as a main concern after assessing multiple symptoms and ruling out other conditions (NHS Greater Glasgow and Clyde, NHS Lanarkshire, NHS Lothian, NHS Tayside).

NHS Shetland responded that not all referrals for people with ME/CFS are accepted and at times people need to be referred to NHS Grampian. Five NHS Boards did not mention whether people with ME/CFS were self-referring for support or were referred from other healthcare areas or services (NHS Borders, NHS Highland, NHS Lanarkshire, NHS Orkney, NHS Tayside).

5.2 How support is being delivered

Table 4 shows responses from all 14 NHS Boards with details about how support was being delivered. Some NHS Boards provided a significant range of options in terms of mode of delivery, while others provided a more limited range of options.

Table 4: How support is being delivered by NHS Boards

NHS Board	Face to Face	Phone	Email	Video	Web Forum	Web Delivery
NHS Ayrshire and Arran	X	X	X	X
NHS Borders	X	X		X
NHS Dumfries and Galloway	X		X	X
NHS Fife	X	X	X	X	X
NHS Forth Valley	X	X
NHS Grampian	X	X		X
NHS Greater Glasgow and Clyde	X	X	X	X
NHS Highland	X	X	X
NHS Lanarkshire	X	X		X		X
NHS Lothian	X	X	X	X
NHS Orkney	X
NHS Shetland	X	X		X
NHS Tayside	X	X	X	X
NHS Western Isles	X	X		X	X	X

The responses showed that all NHS Boards provided face-to-face support. Remote support through phone (n=12, 86%) and video (n=11, 79%) were the next most common delivery modes. Half of NHS Boards said that they provided support via email (n=7, 50%). Web delivery and web forum were the least common modes of support (n=2, 15%). NHS Tayside additionally described a person-centred access method that could include web-based support in the form of signposting and directing to online resources and supported self-management tools.

5.3 Who is delivering support

Table 5 shows which staff members support people with ME/CFS for each NHS Board. The results show that Occupational Therapists, Physiotherapists and Nurses comprised the roles most commonly providing support, followed by doctors (including GPs) and Clinical Psychologists. A multi-disciplinary approach was evident in some NHS Boards with a range of practitioners providing support, while other NHS Boards involved a narrower range of staff.

Table 5: Which staff member is supporting people with ME/CFS^[8]

NHS Board	OT	PT	Nur	Doc	CP	Diet	MHN	Cou	TI	FI	Vol	Other
NHS Ayrshire and Arran	X	X	X	X	X	X			X
NHS Borders	X	X	X	X	X					X
NHS Dumfries and Galloway	X	X	X	X	X	X	X		X	X	X	*
NHS Fife			X
NHS Forth Valley	X	X	X	X								*
NHS Grampian	X	X	X	X	X	X	X					*/
NHS Greater Glasgow and Clyde	X	X	X	X								~
NHS Highland	X	X	X	X	X	X	X	X	X	X		*
NHS Lanarkshire	X	X	X	X	X	X	X			X	X-	*
NHS Lothian	X	X			X
NHS Orkney		X
NHS Shetland	X	X	X		X		X	X
NHS Tayside	X	X	X	X	X	X	X	X	X			*
NHS Western Isles	X	X	X	X	X	X

Response to other:

* Any services requested by primary care can be accessed

/ NOTE: All the above are general services, not specific to people with ME/CFS

~ Art Therapist (Trainee Students), Complementary Therapist, Acupuncturist (Clinical Nurse Specialist) Bowen Therapist (Doctor), Counselling Psychologist (Trainee Students), Music Therapy (occasional Trainee Student)

5.4 Awareness and implementation of NICE guideline changes

NHS Boards were asked about their awareness and implementation of the changes to the NICE guidelines regarding ME/CFS management, specifically around the advice on GET and CBT.

Tables 6 and 7 show the majority of the 12 NHS Boards who responded to this question were very aware of updated NICE guidelines on GET (n=10, 83%) and CBT (n=9, 75%), or at least moderately aware of guidelines on GET. NHS Lanarkshire responded that awareness sits between ‘moderately’ and ‘very’ aware for both aspects of the guideline. One NHS Board self-assessed as ‘somewhat aware’ for updated guidelines on CBT. Two NHS Boards did not provide details of awareness of the NICE guidelines in their area.

Table 6: How aware NHS Boards are about the NICE guideline changes about Graded Exercise Therapy (GET)

Graded Exercise Therapy (GET)
NHS Board	Not aware	Slightly aware	Somewhat aware	Moderately aware	Very aware
NHS Ayrshire and Arran					X
NHS Borders					X
NHS Dumfries and Galloway				X
NHS Fife					X
NHS Forth Valley					X
NHS Grampian					X
NHS Greater Glasgow and Clyde					X
NHS Highland	No response
NHS Lanarkshire				X
NHS Lothian					X
NHS Orkney					X
NHS Shetland					X
NHS Tayside					X
NHS Western Isles	No response

NHS Lothian added that the ME/CFS service is very aware of the NICE guidelines around GET and CBT and do not offer GET. CBT is offered as a supportive therapy, alongside other forms of psychotherapeutic support in accordance with a person-centred approach. This offering was also noted by NHS Grampian, specifically that primary care psychological therapists delivering CBT may offer it to people with ME/CFS but only based on individual preferences and potential benefit.

Table 7: How aware NHS Boards are about the NICE guideline changes about Cognitive Behavioural Therapy (CBT)

Cognitive Behavioural Therapy (CBT)
NHS Board	Not aware	Slightly aware	Somewhat aware	Moderately aware	Very aware
NHS Ayrshire and Arran					X
NHS Borders				X
NHS Dumfries and Galloway			X
NHS Fife					X
NHS Forth Valley					X
NHS Grampian					X
NHS Greater Glasgow and Clyde					X
NHS Highland	Unknown
NHS Lanarkshire				X
NHS Lothian					X
NHS Orkney					X
NHS Shetland					X
NHS Tayside					X
NHS Western Isles	No response

Despite the awareness of the guidance changes reported across the majority of the NHS Boards who responded, formal implementation of the wider ME/CFS guidelines varied.

NHS Lothian, which has a specialist secondary care service for adults with ME/CFS, stated that guidelines are discussed openly with patients. Specific areas of implementation mentioned included offering specialist knowledge within a multi-disciplinary team, using digital platforms to enhance access for people with severe ME/CFS and providing advice to primary care colleagues. New resource (Specialist Occupational Therapy) has been established to support children affected by long COVID and their families from August 2024, which may include children with symptoms of post-viral fatigue. However, NHS Lothian reported that limited resources constrain the specialist team’s ability to train staff and carry out home visits.

In NHS Fife, while recruitment for a Clinical Nurse Specialist is ongoing, the range of services has been reduced and training for staff on ME/CFS management has either been paused or moved online.

NHS Greater Glasgow and Clyde, which supports symptoms of ME/CFS through their Centre for Integrative Care (CIC), responded that it supported people with ME/CFS through pacing rather than using GET. CBT can form part of individualised treatment plans which focus on self-management and self-empowerment. Despite not having a specific ME/CFS service, a dedicated Occupational Therapist post provides one-to-one and small group support for people with ME/CFS. More broadly, support is offered through long-term condition management programmes run by CIC. This NHS Board also reported utilising patient and carer feedback to inform person-centred care programmes, such as the Holistic Day Service Programme.

NHS Lanarkshire reported that it has incorporated the updated guidelines into other long-term condition management services where symptoms may overlap (such as a long COVID patient workbook, a fibromyalgia pathway and generic fatigue management programme). The response highlighted training around the guidelines for the Primary Care Occupational Therapy team, and work to enhance its digital approach to help make energy management and self-monitoring easier for people with ME/CFS.

Three NHS Boards (NHS Borders, NHS Dumfries and Galloway and NHS Grampian) responded that staff engaging with people with ME/CFS were aware of the guideline changes. Scoping work to benchmark staff knowledge of the guideline was reported in NHS Dumfries and Galloway, where there are plans to carry out targeted awareness-raising using the results of this work. This NHS Board also described a greater range of staff or volunteers providing support to people with ME/CFS than in 2022. NHS Grampian described ensuring interventions are consistent with the guideline through promoting energy management rather than GET, delivering consultations in a range of ways, and offering relevant training. However, NHS Grampian noted that access to training on ME/CFS is varied with some professions being able to access training as part of a structured training programme and others (for example, Allied Health Professionals) in a more ad hoc way.

While not referring to the guideline specifically, two NHS Boards (NHS Ayrshire and Arran and NHS Tayside) reported that staff are directed to training and webinars on ME/CFS to help support up-to-date practice. In NHS Ayrshire and Arran, there are ongoing links with Action for ME via a Consultant Occupational Therapist involved in developing online resources about the role of occupational therapy in fatigue management.

Some NHS Boards responded that there was a lack of implementation because there was not a specific service within which they can implement changes, and that some NHS Boards reported primary or secondary care referring individuals to third sector or community options. In addition, lack of dedicated funding, no training or service delivery capacity, and increased caseloads of long-term condition management due to the impact of COVID-19 were cited as barriers to implementing the guidelines. Three NHS Boards (NHS Forth Valley, NHS Highland and NHS Western Isles) provided minimal details on the extent to which guideline implementation is taking place, however this may be reflective of both NHS Boards lacking a specific referral pathway for people with ME/CFS.

5.5 Barriers and opportunities to implementing updated NICE guidelines

Table 8 shows the grouped themes from NHS Board responses when asked about potential barriers and opportunities around implementing the new NICE guidelines.

(Table 8) Emerging themes from responses about the barriers and opportunities around implementing updated NICE guidelines

Barriers

Financial and resource constraints

Challenging ‘traditional’ views about ME/CFS management and treatment

Application of the guidelines in Scotland might be slow to develop

General lack of knowledge around ME/CFS and recognising symptoms early

Existing patient barriers to accessing support – lifestyle, stigma, lack of awareness to report symptoms

Geography of the population

Recruiting staff with specialist skills and training capacity

Opportunities

Improving treatment and symptom management through specific ME/CFS resources

Improving outcomes for people with ME/CFS and for people with other long-term conditions

Education of staff (increased awareness about ME/CFS through training and development, stopping unhelpful practices, and ability to recognise symptoms early)

Utilising MDT staff to support people with ME/CFS and treatment management

Patient engagement (raising awareness of symptoms and empowerment through self-management of their condition)

Strengthen and create links to ME/CFS and long-term condition support pathways and stakeholders (for example, third sector organisations and public health strategies)

Digital technology (range of information resources and wearable technology to support people with ME/CFS)

Eight NHS Boards reflected that opportunities in the new NICE guidelines would be contingent on increased funding and resources increasing. Three NHS Boards did not respond to the question about barriers and four NHS Boards did not respond to the question about opportunities.

5.6 Plans for specialist ME/CFS services

When asked if they had plans to develop specialist ME/CFS services in the future, two NHS Boards said that they already had specialist services in place (NHS Greater Glasgow and Clyde and NHS Lothian), one reported plans for a specialist service (NHS Dumfries and Galloway), and one NHS Board had suspended their specialist service temporarily (NHS Fife). Nine NHS Boards said they did not have plans to develop specialist services for ME/CFS in their area, and one NHS Board did not respond to this question (NHS Western Isles).

A specialist ME/CFS service was established in 2012 in NHS Lothian to provide support in the management of the physical, functional, cognitive, and emotional impacts of their ME/CFS. The service team is comprised of a Specialist Physiotherapist (unfunded), Occupational Therapists and Clinical and Counselling Psychologists, offering management and rehabilitation support to those over the age of 16 on a pan-Lothian basis. Work with the service usually involves activity monitoring and activity management strategies to help stabilise energy levels. It has not historically included children and young people, who were seen within paediatric services, however, since August 2024 a fixed-term Specialist Occupational Therapist has been established for Children and Young People and their families for long COVID and post viral fatigue. NHS Lothian reported major challenges to this small service given high volume of referrals since 2021.

NHS Greater Glasgow and Clyde responded that they already have specialist services in place, however staff delivering support are not part of an ME/CFS specific service. NHS Greater Glasgow and Clyde services for people with ME/CFS are delivered through the Centre for Integrative Care (CIC) and Allied Health Professional (AHP) services. CIC staff include Associate Specialists, Specialist Doctors, Clinical Nurse Specialists, Complementary Therapists, Administrative Staff, Secretaries, and students on placement. AHP staff include Physiotherapists (Bands 5 and 6), Occupational Therapists, and a generic Health Care Support Worker. This NHS Board also responded that having a team delivering service-specific care to ME/CFS would “provide the opportunity to ensure robust, measured implementation of the guidelines, provide education to other AHPs working with CFS/ME patients within generic services and provide targeted care for this patient group.”

NHS Fife has suspended a specialist nurse-led service that extended to people with other long-term conditions in the community. This service included home visits and linking those severely affected by ME/CFS with community services. NHS Fife noted significant challenges to recruit the necessary knowledge and skills for this single-person service post. As a result, patients have been informed of the suspension of the service, and training and professional education have been paused.

NHS Dumfries and Galloway reported plans to extend the support offered by the Allied Health Professionals to enhance an energy limiting conditions pathway for adults, and strengthen links with other services and the wider rehabilitation MDT.

NHS Grampian and NHS Tayside noted focusing on a pathway for multiple conditions that would include ME/CFS. NHS Grampian has been reviewing the pathways for people with complex long-term symptoms and described work to identify models that may be used across conditions, such as Functional Neurological Disorder (FND), long COVID and ME/CFS. NHS Tayside described applying learning from the evaluation of services for those with long COVID to support future patients living with long-term conditions.

NHS Lanarkshire did not indicate any plans to develop a specific ME/CFS service but referenced a joint pathway for long COVID and ME/CFS which is managed within mainstream services. This pathway will include an online patient portal to help individuals navigate care, and support symptom management and rehabilitation.

5.7 Potential benefits of combined long-term condition pathways

13 of the 14 NHS Boards who responded to this survey identified ‘significant’ or considerable synergies between ME/CFS and other long-term conditions.

Long COVID featured in five responses. NHS Fife identified that shared expertise could improve research, clinical care, and self-management for both conditions, and consequently could reduce service demand. NHS Borders identified that a long COVID Clinical Lead provides opportunities to review the pathways and management approach for multiple long-term conditions, including ME/CFS, which could contribute to improved patient outcomes and service development. NHS Tayside noted that a long COVID pathway would share common opportunities and types of intervention with a ME/CFS pathway.

NHS Greater Glasgow and Clyde highlighted opportunities for learning and potentially integrating assessments and treatment approaches for long COVID and ME/CFS into physiotherapeutic practices within an individualised treatment and management pathway. Their updated response noted that a 12-month pilot intervention to improve outcomes for people experiencing ME/CFS or long COVID (‘The Lightning Process’) had been extended to 50 patients in 2023-24. Moreover that the Centre for Integrative Care (CIC) helped in the design of a new AHP service for long COVID and continue to work closely with them.

NHS Highland responded that synergies between ME/CFS and long COVID were possible but indicated that more evidence is needed to merge support for these conditions.

NHS Dumfries and Galloway have combined all energy-limiting conditions within one pathway. In NHS Ayrshire and Arran, synergies were noted between ME/CFS and Neurological Rehabilitation. NHS Shetland conceptualised a shift from an acute, reactive, crisis intervention model, to a supportive service and self-management approach for long-term conditions established via community options and peer support.

5.8 Provision of outcome data/patient feedback

NHS Boards were asked about whether they were provided with feedback from patients or outcome data to help them understand the impact or experiences of people with ME/CFS using their services. The results in Table 9 show that only three NHS Boards (NHS Fife, NHS Greater Glasgow and Clyde, NHS Lanarkshire) reported capturing outcome data or patient feedback. Outcome measures comprised of satisfaction surveys in addition to a range of clinical outcome surveys/tools. The low use of outcome data/patient feedback may be linked to the fact that very few NHS Boards who responded use specific ME/CFS services to support patients.

Three NHS Boards described upcoming work to refine the use of outcome data and patient feedback. NHS Dumfries and Galloway described plans for more consistent use of local patient surveys and quality of life questionnaires. NHS Tayside reported a planned review of local use of patient reported outcome measures. NHS Ayrshire and Arran referenced an intent to undertake a self-evaluation of the Standards for Neurological Care and Support, which will include engagement with people living with ME/CFS.

(Table 9) NHS Boards that capture outcome data and/or patient feedback

NHS Board: NHS Fife

Types of Outcome Data/Patient Feedback: Patient opinion website reports, service led surveys, patient satisfaction surveys, open suggestions from patients both individually and through local support groups, national charity agencies, colleagues, and professionals. Clinical outcomes measured using selective forms applicable to case management.

NHS Board: NHS Greater Glasgow and Clyde

Types of Outcome Data/Patient Feedback: Centre for Integrative Care (CIC) conducts audits to assess outcome measures (using Patient Reported Outcome Measures (PROMS), MYMOP2, WEMWEBS, and FSS).

Patient and carer feedback through the CIC and the Friends of Centre for Integrative Care (not all are ME/CFS patients).

The Allied Health Professional service do not yet use outcome measures specific to ME/CFS, PROMS are used for ‘Moving Into Balance’ classes that are accessed by patients with a range of conditions, which is not specific to ME/CFS.

NHS Board: NHS Lanarkshire

Types of Outcome Data/Patient Feedback: Canadian Occupational Performance Measure (COPM) and Short Warwick Edinburgh Mental Wellbeing Scale (SWEMWBS) collected by Primary care OT for ME/CFS patients. Some patient feedback received via Care Opinion.

Physiotherapy use MFI (Management of Fatigue Index) and SF36 (Short Form (36) Health Survey)

5.9 Additional reflections from NHS Boards

Six NHS Boards shared the same feedback in relation to future directions, demonstrating a shared desire to improve research and resource to understand and assess a range of clinical features and symptoms associated with ME/CFS:

“Nationally, NHS Scotland should be looking to be a world leader and actively researching emerging theories of ME/CFS - the links to hypermobility, spine issues, autoimmunity, dysautonomia, cerebral blood flow etc. NHS Scotland does not have a single upright cross-sectional scanner (CT or MRI), a vital tool for assessing stress on the upper spinal cord and likely neurological dysfunction.”

Additionally, NHS Greater Glasgow and Clyde highlighted a range of interventions and service developments that it is currently trialling or planning to support people with ME/CFS. Support includes:

• The Lightning Process within ME/CFS and long COVID Unit,
• Shared learning and working through induction of AHPs from Neurological Outpatients Department and Pain Services,
• Class focused on pacing and new guidelines around movement as a bridge between physio and community services,
• Occupational Therapy support to provide holistic (mental and physical health) non-pharmacological interventions that optimise function and enhance quality of life.

NHS Lothian described its commitment to developing and improving their service, whilst coping with resource challenges and the impacts of this issue on patient waiting times. NHS Fife indicated a consideration of future planning and career progression, including maximising existing skills across professions to ensure the ME/CFS service continues despite recruitment difficulties.