Wales’ ME/CFS Services: A Patchwork of Progress, Variations and Gaps
WAMES survey report 2025-6
Introduction
In September 2025 WAMES sent a questionnaire to all 7 Health Boards in Wales hoping to find out:
- what stage the development of Services for people with ME/CFS had reached
- which ages and illness severity was being catered for
- how the Services operate and can be accessed
- whether the management recommendations from the 2021 NICE guideline for ME/CFS were being implemented.
All Health Boards replied to the survey between October 2025 and January 2026. This report presents an analysis of responses. The questionnaire captured some information on service characteristics, operational models, staffing, referral pathways and implementation of service recommendations in NICE guidelines.
Background
In March 2023 the Welsh Government announced an increase in funding for NHS long COVID services to widen access ‘to people with other post-viral associated conditions.’
The Health Minister at the time, Eluned Morgan MS said:
“We know many people with other, long-term conditions have reported feeling ‘misunderstood’ and ‘invisible’. I hope by widening access to Adferiad (Recovery) services we can better support people with conditions such as ME/CFS and fibromyalgia to get a diagnosis, manage their symptoms and access rehabilitation services, which are vital in helping improve physical and mental health and wellbeing.” [1]
Each Health Board was responsible for expanding services separately. This was the first time in WAMES’ 25 years of advocacy that people with ME/CFS had been named as potential recipients of Welsh Government funded services. It is important to note that ME/CFS is one of 6 possible medical conditions that the Welsh Government suggested expanding Long COVID services to include.
The funding was given for a “community integrated and multi-professional rehabilitation and recovery service model”, “including support for diagnosis in collaboration with primary and secondary care partners.” [Ref? Internal document]
A Welsh Government paper on Long COVID in 2024 links to the Community pathway on Long COVID and notes that “Long COVID services therefore, may have elements that are appropriate to guide management for ME/CFS type conditions, but the assessment and management for both may vary in some respects, depending on presentation and systems affected.” [2] https://www.gov.wales/sites/default/files/publications/2024-10/long-covid-update-report-2024.pdf
Before the pandemic there were an estimated 13,000 people with ME/CFS in Wales but by 2025 researchers suggested that figure could have increased to over 19,100, with an additional 1,625,370 having developed the condition after experiencing a COVID infection. [3]
In Oct 2021 revised NICE guidelines were published, retaining a recommendation to establish specialist services for ME/CFS, but removing the focus on fatigue, CBT and GET. Instead, the emphasis was placed on the key roles of Post Exertional Malaise/ Post Exertional Symptom Exacerbation (PEM/PESE) and Energy Management. [4]. Welsh Government and the NHS have both repeated a commitment to implementing the NICE guidelines in Wales unless it can be shown there is a good reason not to do so. [ ] https://www.gov.wales/national-institute-health-and-care-excellence-nice-guidelines
Guides from the professional association The British Association of Clinicians in ME/CFS (BACME) have influenced past services for ME/CFS in Wales but the charity is increasingly being criticised for inconsistent application of the 2021 NICE guideline for ME/CFS and therapy approaches based on lack of evidence e.g. [ ] . https://www.s4me.info/threads/an-open-letter-to-bacme-re-me-cfs-guide-to-therapy-2025.48904/
Key findings:
Who is developing expanded services?
All Health Boards have been offering specialist services for Long COVID since 2021 and 2 were also separately offering some form of service aimed at people with ME/CFS prior to that – in Powys and Betsi Cadwaladr Health Board areas. Development of expanded services are progressing at varying speeds in different parts of Wales. Three of the 7 services were fully launched by the start of 2026 and one was soft launched and then closed down. 6 services remain operational, but with many differences.
| Health Board | Service Name | Launch Status | |
| Powys THB | Powys Living Well Service / Gwasanaeth Byw’n Dda Powys | Soft launch 2008
Fully launched |
|
| Cardiff and Vale UHB | Keeping me well: Living well / Cadw’n fi’n iach: adferiad | Soft launch Jan 2024
Fully launched? |
|
| Cwm Taf Morgannwg UHB | Primary Fatigue Service / Gwasanaeth Blinder Cyntaf | Soft launch Oct 2023
Closed 2024 |
|
| Betsi Cadwaladr UHB | Living Well Service / Gwasanaeth Byw’n Dda | Soft launch 2024 | |
| Swansea Bay UHB | Golau Adferiad Adult and CYP Service | Soft launch Nov 2024 adults
Soft launch Jan 2025 CYP |
|
| Aneurin Bevan UHB | Symptom Management Service / Gwasanaeth Rheoli Symptomau | Soft launch Oct 2024
Full launch April 2025 |
|
| Hywel Dda UHB | Long Covid and ME/CFS Service / Gwasanaeth Covid Hir a ME/CFS | Soft launch April 2025 | |
THB = Teaching Health Board UHB = University Health Board
Survey Responses index:
Who is expanding services to include people with ME/CFS?
Do the services cater for all people with ME/CFS?
How can people access the services?
How long can people access a service for?
How do services educate about ME/CFS?
Which assessment and function tools are used?
How is service effectiveness assessed?
Do the services follow NICE recommendations?
- carry out assessments and confirm diagnosis?
- offer a personalised care and support plan?
- offer help with all aspects of the plan?
Cwm Taf University Health Board response
We asked several questions about the way the services were being delivered and how they could be accessed.
Who do the services cater for?
- All 6 services cater for adults with mild-moderate ME/CFS. However, provision for other patient groups is limited:
- 3 services support mild-moderate children and young people – Hywel Dda, Swansea Bay, Aneurin Bevan
- 2 services support severely affected children and young people – Hywel Dda, Aneurin Bevan
- 3 services support severely affected adults – Betsi Cadwaladr, Hywel Dda, Aneurin Bevan
How can people access the services?
- All 6 services accept referrals into their services from GPs and hospital consultants.
- All except Swansea Bay also accept referrals from Allied Health Professionals (the umbrella term for a wide range of therapists).
- Cardiff, Aneurin Bevan and Betsi also accept referrals from Social Workers.
Patients can self-refer into Aneurin Bevan and Betsi Cadwaladr, and Cardiff is working towards accepting self-referrals.
Is there a fixed discharge time?
- All 6 services allow users to access as long as they need, some will officially discharge them once their services are no longer necessary, but all permit people to refer themselves back in to the service if necessary. This could be ‘patient initiated follow up’, ‘time specific’ or ‘see on symptoms’ approach.
How do services educate about the illness ME/CFS?
- There is considerable variation in the way that Services say that information about ME/CFS is communicated, as opposed to information about self-management strategies.
- Cardiff, ABU and Betsi have information on their websites
- Swansea sends information to the health professional who refers the patient. They and Hywel Dda are planning website content.
- All except Swansea say they run a virtual course.
- Hywel Dda and Aneurin Bevan share information during one-to one assessments and/or sessions.
- All except Swansea share leaflets about ME/CFS
NB From the answers it was not clear whether the virtual courses and leaflets were dedicated to describing/explaining the illness or whether this information was combined with management information or service information. We also did not ask about the depth of information shared about the research, clinical characteristics and experiences of ME/CFS.
Which assessment tools do services use/recommend?
We asked Health Boards if they recommend Symptom assessment tools and activity logs to enable people with ME/CFS to record which symptoms they have and to measure the severity and impact of them, which can be difficult to quantify. These tools also help patients and healthcare professionals to decide which management strategies might be helpful. Additionally, they can be used to track changes in the variety of symptoms experienced and their severity over time, which can help when assessing the usefulness of management strategies.
- All 6 services recommend using Activity logs and worksheets and Betsi mentioned Symptom diaries
- 2 services are happy to help users with the DePaul Symptom Questionnaire (DSQ) with service users, which was designed specifically to measure ME/CFS symptoms, plus their frequency and severity over time. These were Betsi and ABUHB
- 4 services, Swansea, Betsi, Powys and Hywel Dda use EQ5D5L, which is a questionnaire designed to measure general health-related quality of life and is often used to compare experiences in different services or areas.
- 0 services use FUNCAP, which is a questionnaire designed to assess functional capacity, taking into account post-exertional malaise etc. in ME/CFS.
- 4 services, Cardiff, Betsi, Powys and Aneurin Bevan are happy to help patients use the Visible app which is a commercial app and armband designed to monitor heart rate and activity to aid pacing. NB Visible uses FUNCAP.
- 2 services, Cardiff, Powys and AB, are happy to help patients use the Calm app, which is a commercial app designed to help reduce stress, improve sleep, and practice mindfulness through guided meditations, Sleep Stories, and breathing exercises.
Additional comments:
- Betsi also makes use of: Symptom diaries, Discovery Star/ Outcomes Star and PROMIS Discovery star is a tool designed to help people who live with long‑lasting physical symptoms—like fatigue, breathlessness, pain, or palpitations—understand their experiences and track their progress over time. It guides someone through a personal journey of figuring out what helps them feel more stable, fulfilled, and in control of their wellbeing.
PROMIS (Patient-Reported Outcomes Measurement Information System) is a questionnaire designed to evaluate and monitor physical, mental, and social health in both adults and children.
- Aneurin Bevan will work with people to utilise any tools they feel comfortable with to self-assess the development of symptoms and function; this will vary dependent on individual capacity and affordability. They also aim to pilot, on behalf of similar services across Wales, patient reported outcome measures to support assessment of the effectiveness of the service delivery.
- Cardiff noted that they also have service users where English/Welsh are not their first Language. This will inevitably limit the ability of participants to make use of assessment tools.
How do Health Boards assess the effectiveness of their services?
- All services conduct service user questionnaires and share knowledge amongst the other services throughout Wales
We also asked whether they co-produced with service users and 3rd sector, and received positive responses from all, but we hadn’t explained what we meant, so may not have received the answers we expected. We wanted to know if there had been, and continued to be, co-production of services or co-design of services. Co-production is defined as:
a collaborative approach that involves working in equal partnership with service users, carers, families, and communities… ensuring that the voices of those who use health services are integral to decision-making. [ ]
In practice Services have used ‘engagement practices’ or ‘focus groups’ to listen to users or potential users and carers, but we have not clarified if all stakeholders or interested parties are equal partners in decision making.
The Role of NICE guidelines
We asked a number of questions to find out the extent to which the service model is being shaped by NICE recommendations. NICE has laid down guidelines for Assessment and care and support planning by an ME/CFS specialist team, highlighting the importance of the ability to confirm a diagnosis, help develop a personalised management plan for energy management, symptom treatment, and flare/relapse management. [ ]
Who are the staff on the specialist team?
- All 6 services employ multi-disciplinary teams to provide support to multiple conditions, not just ME/CFS. All contain physiotherapists, occupational therapists and psychologists. Some services employ additional professionals, many in a part-time capacity.
- Consultants – Aneurin Bevan can access support from a Rehabilitation consultant.
- Paediatrician – is part of the team in Aneurin Bevan and Swansea. Hywel Dda have links with the paediatric team
- GP – 3 services include GPs on their team: Swansea Bay, Betsi and Powys
- Dietician – 4 service teams include dieticians: Swansea, Cardiff, Betsi and Powys
- Speech and language – 2 services include speech and language therapists on the team: Cardiff, Betsi
- An Advanced Clinical Practitioner can be found on the Betsi team (ACPs are trained to independently assess, diagnose, treat, and manage complex cases.
- Exercise physiologists and the National Exercise Referral Scheme (NERS) can be found in the Aneurin Bevan team.
Graphic ? A bar chart showing one column for each HB service. In each column show how many of the specialities they have, with a different colour for each? Starting with the most common at the bottom
Do services offer a holistic assessment & confirm diagnosis of ME/CFS?
- 3 services say they offer full assessment and confirmation of diagnosis: Betsi, Hywel Dda and Powys.
- 3 services say they provide assessment of needs as required, but diagnosis should be obtained before referral – Swansea Bay, Cardiff and Aneurin Bevan.
Do Services offer help developing a Care and Support Plan?
NICE describes a Care and Support Pan as a plan devised by the service user following a holistic or wide-ranging assessment. It gives an overview of other assessments and plans, made or to be made, in areas such as ‘social care, energy management, physical activity, physical functioning and mobility, cognitive behavioural therapy and dietary management.’ [NICE ]
It is recommended because it brings together key information in one place, which can help if something like brain fog is a problem, and can be used to share that information with others such as healthcare practitioners, families, friends, employers and care workers. [NICE ]
- 5 services, all except Powys, will provide support with devising a plan if asked, though some mentioned that it might not be appropriate for, or desired by, every service user.
- BCUHB will provide a named contact within the specialist team for adults (& carers)to coordinate their care and support plan, help them access services and support them during periods of relapse.
- What parts of a Care and Support Plan can Services help with?
ME/CFS can affect all areas of a person’s life but not all people with ME will need to make a plan to manage everything. NICE suggests a wide range of areas people might need help from a specialist team to manage. We asked Services which areas they had expertise to cover as listed at NICE 1.10.1:
- All 6 services replied to say their staff were able to help with:
- Self-management strategies, including energy management for PEM/PESE
- Mobility, avoiding falls and problems from loss of dexterity, including access to aids and rehabilitation services
- Support to engage in work, education, social activities and hobbies
- Management of flare-ups and relapses
- Activities of daily living, including dental health
- Psychological, emotional and social wellbeing, including family and sexual
- Diet and nutrition
- Mobility, avoiding falls and problems from loss of dexterity, including access to aids and rehabilitation services
- 4 Services – BC, SB, HD, AB – are able to help with
- Symptom management, including prescribing and medicines management Powys can help with medicines management but not prescribe
- 4 Services – BC, HD, Po, AB – are able to help with
- Social care and support
Graphic? What do we want to highlight here? That not all HBs can help with everything NICE recommends? How do we illustrate that? A bar for each HB with a coloured segment for every component?
Cwm Taf University Health Board
Cwm Taf UHB launched a Primary Fatigue Service in 2024 but closed it in 2025 due to a shortfall in referrals. In spite of this the HB say it is possible for people with ME/CFS to receive healthcare and support:
“CTMUHB continues to support patients affected by ME/CFS on a needs-led basis.
CTMUHB services will continue to support people to access a framework of quality information and education for self-management, with assessment and advice according to the needs of our patients.”
It is unclear how this might be accessed, other than by getting a diagnosis from a GP and requesting a referral to general services. Hospital consultants and Allied Health Professionals can also refer patients. They say they can offer help for mild-moderately affected adults with:
- Information and support needs
- Development of personalised care and support plans
- Self-management strategies including energy management for PEM/PESE
- Guidance on managing flare-ups and relapses;
- Physical functioning and mobility
- Support for activities of daily living
- Mobility and daily living aids and adaptations to increase or maintain independence, avoiding falls and problems from loss of dexterity,
- A copy of the plan for the person and their family or carers (as appropriate) and their GP
- Social care and support
They supply information about ME/CFS from a variety of perceptions of the illness on their website, explaining the theory of dysregulation and proposing the management of ME/CFS as achieving homeostasis by balancing body systems.
