Meetings

NDM8884 Adam Price (Carmarthen East and Dinefwr) 

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. 

Maeve Boothby O’Neill: Prevention of Future Deaths Report 

Supporters 
Altaf Hussain (South Wales West) 

Cefin Campbell (Mid and West Wales) 

Heledd Fychan (South Wales Central) 

Jane Dodds (Mid and West Wales) 

Joel James (South Wales Central) 

John Griffiths (Newport East) 

Julie Morgan (Cardiff North) 

Llyr Gruffydd (North Wales) 

Luke Fletcher (South Wales West) 

Mabon ap Gwynfor (Dwyfor Meirionnydd) 

Mark Isherwood (North Wales) 

Mike Hedges (Swansea East) 

Rhun ap Iorwerth (Ynys Môn) 

Rhys ab Owen (South Wales Central) 

Sian Gwenllian (Arfon) 

Sioned Williams (South Wales West) 

The following amendment was tabled:   

Amendment 1 Adam Price (Carmarthen East and Dinefwr) 
Add as new sub-point at end of point 4: 

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 item started at 15.28

Voting on the motion and amendment under this item was deferred until Voting Time.

NNDM8884 Adam Price (Carmarthen East and Dinefwr) 

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. 

The following amendment was tabled:

Amendment 1 Adam Price (Carmarthen East and Dinefwr) 
Add as new sub-point at end of point 4: 

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. 

A vote was taken on amendment 1:

Amendment 1 was agreed.

A vote was taken on the motion as amended:
NNDM8884 Adam Price (Carmarthen East and Dinefwr) 

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. 

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 result was as follows:

The motion as amended was agreed.

Postponed until 26 November 2025

This item was postponed until 26 November 2025