Services for ME/CFS in Wales: a Patchwork of Progress, Regional Variations and Gaps
WAMES sent out a survey to NHS Wales Adferiad Services in September 2025, and received responses from all 7 Health Boards between October 2025 and January 2026.
We wanted to know:
♦ 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 responded, though currently only 6 have a Service which offers support to a range of conditions including Long COVID and ME/CFS.
Health Boards have been developing their Adferiad services to include ME/CFS since March 2023 when the Welsh Government allocated extra money for that purpose.
While it is clear that a lot of progress has been made, the Report reveals that 3 years later Services are at variable stages of development, with 3 still to launch fully. One has launched and closed just over a year later.
Key findings:
♦ Services do not cater for people of all ages and severities
♦ Referral routes into the services vary. Only 2 services so far accept self referrals
♦ Multidisciplinary teams with varying ranges of specialisms cater for
multiple conditions, not just ME/CFS.
♦ Services vary in their ability to implement all the NICE guideline
management recommendations
♦ There is under-use of ME specific assessment tools and no
standardisation in which other tools are used across services
♦ Availability of information and communication methods vary
♦ Access to diagnosis and confirmation of diagnosis varies.
The Bottom Line
Welsh services have made progress, but ME/CFS services remain a
patchwork. Without medical national leadership and consistent
standards, tens of thousands of people will continue to fall through the gaps. This isn’t just variation. It’s inequality.
WAMES is grateful for the cooperation of the Health Boards and will continue to discuss patient needs and ask for equity in healthcare with them, NHS management and the Welsh Government.
Please help us by continuing to send to WAMES your comments, what you need from a Service and experiences of attending the Services:
Download the report:
A Patchwork of Progress, Regional Variations and Gaps
Thank you Jan. I think things are thawing, seeing a consultant at my local AB Trust, they absolutely accepted severe ME and its impact, as well as POTS and MCAS. Very positive.
(Need an op for something, it takes me a wheelchair a carer pushing it and private car transport to prevent a long exhausting journey).
I contacted my health board to make a complaint that the specialist I was seeing for my ME left and now I have been left without any medical support. My health board is Cardiff and Vale and I was also offered their well being service. This is pretty useless for me. One because it only has OT and physio support and I am an OT so know exactly what I will be told and secondly they aren’t offering anything specialist or have any backing from a doctor. I have had to pay privately for multiple specialists costing me a fortune. My next private appointment is with a pain specialist. I have suffered from ME for over 25 years so I need much more specialist and advanced support than a ‘wellbeing service’ can offer.
Sorry for the delay in acknowledging your email. It got missed while getting ready to launch our new site. WAMES is aware that the approach taken by Health Boards differs and this is something we will be discussing with the Health Minster and NHS Wales. I’d be grateful if you could email me or respond here to let us know what kind of s’pecialaist and advanced support’ you are hoping for. It helps us to know what to tell people need. Jan