Welsh Assembly Debate on ME – April 2025 Summary

On 24 April 2025, the Senedd (Welsh Parliament) tabled Motion NNDM8884 to address the urgent needs of people living with Myalgic Encephalomyelitis (ME), a chronic and disabling illness.

Key points from the motion include:

• Recognition of ME Severity: ME affects individuals at varying levels, with 25% classified by NICE as either severely or very severely affected—often bedbound and requiring full-time or palliative care.
• Concern Over Inadequate Support: The motion highlights that those most severely affected often receive the least appropriate care and support.
• Calls to Action for the Welsh Government:
  • Respond to the Coroner’s Prevention of Future Deaths Report from England and ensure similar tragedies do not occur in Wales.
  • Ensure Adferiad-funded ME services meet the needs of those with severe and very severe ME.
  • Establish a national expert group to develop all-Wales guidance and quality standards for ME care.
  • Prioritise the appointment of a specialist consultant for post-infectious chronic conditions, including ME and long COVID.
  • Improve training for NHS staff, social workers, and educators on the care needs of people with ME.
  • Ensure health boards co-produce ME and long COVID services with input from patients and carers.

This motion reflects a growing recognition of the challenges faced by people with ME in Wales and calls for systemic improvements in care, training, and policy.