Although delayed, the Senedd held a Member’s Debate on ME on 10th December 2025 at behest of Adam Price MS (Motion NDM8884) in the chamber of the Senedd and responded to by Jeremy Miles MS Cabinet Secretary for Health and Social Care.
The original Motion was
To propose that the Senedd:
1. Notes that myalgic encephalomyelitis (ME) is a chronic and disabling illness at all levels of severity.
2. Notes that, of those suffering from ME, 25 per cent are categorised by NICE as ‘severe: mainly bed bound or housebound’, and ‘very severe: fully bedbound’, requiring full-time care and, in the severest cases, palliative care and tube feeding.
3. Regrets that it is often those with the greatest severity levels of ME who are provided with the least amount of appropriate care and treatment.
4. Calls on the Welsh Government to:a) respond to the concerns raised in the Coroner in England’s Prevention of Future Deaths Report, and explain what practical steps they will take to ensure that no patient in Wales will ever be placed in such tragic circumstances as those described in the report;
b) ensure that the Adferiad-funded ME services are making provision appropriate to the needs of patients with severe and very severe ME;
c) bring together an expert group of health professionals and people with lived experience, at a national level, to develop all-Wales guidance and quality standards on ME, including for the most severely affected;
d) make the appointment of an all-Wales specialist consultant for post-infectious chronic conditions—including ME and long COVID—a priority;
e) improve the training on ME for professionals, firstly in the NHS, but also in social services and schools: in particular, raising awareness of the care needs of adults and children with severe and very severe ME; and
f) ensure that health boards truly co-produce their ME and long COVID Adferiad services, taking into account the lived experiences of those suffering at the severest levels and of those caring for them.
However, Mr Price also asked for an amendment at the end of point 4 namely to “develop a strategic approach to research by supporting Wales to host one of the five proposed UK hubs for collaborative translational research into pathological mechanisms that cause ME, long COVID and related post-acute infection conditions.”
What is stiking is the proposed 5 hubs proposal which appears new. It was not in teh action points of the ME/CFS Delivery Plan. Is this movement to recogise the call by researchers, patients and charities (including ME Research UK) for a new co-ordinated and better funded research landscape? Certainly, Mr Price hoped a hub would be based in Wales.
The Minister’s response does hold out hope
Adam Price and others importantly referred to the significance of research, and I agree with him and with others who have referred to it. I’ve asked my officials to reach out to our research partners in the UK to better understand what the specific proposals are for funding and establishing the UK hubs that have been referred to. This will enable us to engage with our research community to explore and take advantage of those potential opportunities, and a meeting between my officials and Professor David Price is scheduled in the coming weeks.
