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: jan@wames.org.uk

Download the report:

A Patchwork of Progress, Regional Variations and Gaps