Photo of Adam Price, Image cropped (original image here), shared under Creative Commons’ Attribution 4.0 International licence
Last Wednesday, Adam Price, Senedd Member (MS) for Carmarthen East and Dinefwr, led a members’ debate on ME, emphasising the severely and very severely affected.
The motion proposed that the Senedd:
Notes that myalgic encephalomyelitis (ME) is a chronic and disabling illness at all levels of severity.
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.
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.
- 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.
- g) 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.
The motion was supported by Senedd Members Altaf Hussain, Cefin Campbell, Heledd Fychan, Jane Dodds, Joel James, John Griffiths, Julie Morgan, Llyr Gruffydd, Luke Fletcher, Mabon ap Gwynfor, Mark Isherwood, Mike Hedges, Rhun ap Iorwerth, Rhys ab Owen, Siân Gwenllian & Sioned Williams, and had taken sustained pressure from WAMES and other patient representatives supporting MSs to achieve.
MSs Mark Isherwood (Con, North Wales region), John Griffiths (Lab, Newport East), Mabon ap Gwynfor (Plaid Cymru, Dwyfor Meirionnydd), Mike Hedges (Lab, Swansea East), Sioned Williams (Plaid Cymru, South Wales West region), Julie Morgan (Lab, Cardiff North), Rhys ab Owen (Independent, South Wales Central region), Luke Fletcher (Plaid Cymru, Sout Wales West region), Jenny Rathbone (Lab, Cardiff Central) & Delyth Jewell (Plaid Cymru, South Wales East region), followed Adam Price, mainly recounting constituents’ negative experiences from lack of or inappropriate medical & care services.
Responding for the Welsh Government, Cabinet Secretary for Health & Social Care Jeremy Price (Labour MS for Neath) referred to some of the points made in support of the motion, including recognition of Long Covid and those cases which presented like ME, and cited the funding allocated to the “Adferiad services for people with other post-infection associated chronic conditions”, and appreciation shown for the North Wales community complex condition service.
He did acknowledge unmet need – including issues with accessing these services, particularly for the severely affected, and the need for services to develop further – recognising “there is more to do to support people with post-infection associated illness, especially for those with the most serious symptoms and forms of illness, those with severe and very severe ME. We have made a commitment and investment to support the continuation and expansion of services…”
He went on to say that the Welsh Government would review calls for a Welsh Clinical Lead, a clinical group to develop and disseminate practice improvement, and to establish national standard for Wales. Regarding the potential for Wales to have a research centre contributing to improved understanding of ME and other post-infectious illnesses, there was already a meeting scheduled between Health & Social Care officials and Professor David Price, Chair of Infection & Immunity at Cardiff University School of Medicine. Also, he will get Department officials to review the Prevention of Future Deaths Coroner’s Report, and the Royal Devon & Exeter Hospital’s guidance on providing inpatient care for the severely affected, and how these might be applied Welsh services.
He didn’t commit to any time or other scale for progress, but undertook to report back to the Senedd.
The ME Association was invited to support the motion brought to the Senedd and was asked to provide key points for inclusion in the manifesto, particularly in relation to the lack of service provision for people with Severe and Very Severe ME/CFS in Wales. We were pleased to contribute to this work. To date, the ME Association has engaged with six of the seven Welsh Health Boards, sharing information and offering support to inform clinical practice and service development.
We will continue to follow developments in Wales with interest following the Senedd debate and would like to thank Adam Price for all the work he is doing on raising the profile of ME/CFS in Wales at a parliamentary level, and to Severe ME Difrifol Cymru for working with politicians to highlight the needs of those with severe and very severe ME/CFS in Wales.
MEA Comment
The ME Association would like to thank Adam Price for all the work he is doing on raising the profile of ME/CFS in Wales at a parliamentary level, and to Severe ME Difrifol Cymru for working with politicians to highlight the needs of those with severe and very severe ME/CFS in Wales.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
Further information
- Nation Cymru: ‘Living in darkness’: Senedd shines light on Wales’ ‘invisible’ ME crisis | Dec 11, 2025
- Watch the full debate (1 hour): **TW: Upsetting Content** via Broken Battery | Dec 11, 2025 (Transcript)