Action for ME, alongside the Welsh Association of ME and CFS Support, Severe ME Difrifol Cymru and Long Covid Support, recently attended a Ministerial Meeting on ME with Mabon ap Gwynfor MS, Cabinet Minister for Health and Care.
The meeting, which was held on Tuesday 28 July, focussed on four key asks:
1. Bring together a National Expert Working Group of health care professionals and people with lived experience to coproduce an All-Wales Strategy and Delivery Plan for ME and Long Covid to ensure equity of service, and compliance with NICE guidance (NG206 ME/CFS), tailored to patient needs across all ages and all severity levels.
2. Appoint an All-Wales Clinical Lead / Medical Consultant for ME and Long Covid to coordinate care across health boards, reduce regional variation, support complex cases, guide training, lead and direct the development of treatment for ME and Long Covid, and keep Wales in step with emerging research evidence.
3. Develop a Welsh Government-led ME/CFS and Long Covid Research Strategy by 2027 to accelerate research through Wales’ Life Sciences sector. The strategy would bring together expertise from across the Welsh research and health communities, set clear national priorities, and support the translation of emerging findings from DecodeME, LOCOME and Sequence ME & Long Covid into effective diagnostics and treatments in collaboration with leading research groups in the UK and internationally.
4. Consider long-term sequelae in any future pandemic planning or preventive strategies starting with an urgent review of Infection Prevention Control (IPC) guidance in healthcare.
The Cabinet Minister for Health and Care was very supporting of our asks. He recognised the wider community’s frustration with the current system and understands the community would like to be part of the solution.
The Cabinet Minister confirmed that he will take away the key asks and keep the group informed. It is likely that the Ministerial team will be in touch by November.
The Cabinet Minister also specifically asked Action for ME’s CEO, Sonya Chowdhury, about Action for ME’s experience working across different governments and if there had been any knowledge sharing between them. Sonya responded that there has been little despite opportunities.
We will continue to keep the community informed.
