Welsh Assembly – ME Questions and Answers (December 2025)
Key Points Noted by the Senedd
- ME is recognised as a chronic, disabling illness affecting individuals at all severity levels. [WELSH ASSE…ember 2025 | PDF]
- 25% of people with ME are severely or very severely affected, meaning they are largely or fully bedbound, often requiring full‑time care, palliative management, or tube feeding. [WELSH ASSE…ember 2025 | PDF]
- The Senedd expressed regret that those with the highest severity of ME frequently receive the least appropriate care and treatment. [WELSH ASSE…ember 2025 | PDF]
Actions the Senedd Called on the Welsh Government to Deliver
1. Respond to the Prevention of Future Deaths Report
Provide a Welsh Government response to the English Coroner’s report concerning the tragic case of Maeve Boothby O’Neill, ensuring that no patient in Wales ever faces similar circumstances. [WELSH ASSE…ember 2025 | PDF]
2. Strengthen Adferiad‑Funded ME Services
Ensure these services properly meet the needs of patients with severe and very severe ME, whose care needs are among the most complex. [WELSH ASSE…ember 2025 | PDF]
3. Develop National Guidance and Quality Standards
Establish an all‑Wales expert group, including clinicians and people with lived experience, to create consistent ME guidance and quality standards, with specific focus on the most severely affected. [WELSH ASSE…ember 2025 | PDF]
4. Appoint a Specialist Consultant
Prioritise the appointment of an all‑Wales specialist consultant in post‑infectious chronic conditions, covering ME and Long Covid. [WELSH ASSE…ember 2025 | PDF]
5. Improve Professional Training Across Wales
Introduce better ME training for:
- NHS clinicians
- Social services staff
- School staff
with emphasis on understanding the needs of severe and very severe ME in both adults and children. [WELSH ASSE…ember 2025 | PDF]
6. Ensure True Co‑Production of Services
Require health boards to co‑produce their ME and Long Covid Adferiad services with patients and carers, especially those living with the most severe forms of ME. [WELSH ASSE…ember 2025 | PDF]
Summary
The December 2025 Welsh Assembly session acknowledged the seriousness of ME and highlighted the ongoing failings in care for severely affected patients. The Senedd called for urgent action from the Welsh Government, including national clinical leadership, improved service standards, better professional training, and meaningful involvement of patients and carers in service design.