Proposed Senedd debate on ME
highlighting the plight of severe and very severe ME
The motion (or request) for a debate in the Senedd was tabled on 24th April 2025 by Adam Price MS. Unfortunately it was not succesful. The Senedd Business Committee chose to allocate the May 14th Member Debate slot to another motion.
‘This does not mean all hope is lost’ says the instigator Rob Messenger!
“There will be other opportunities for our motion to go forward. We’re waiting to hear whether there will be a chance in June before the Senedd goes into Summer Recess between 21 July and 14 September.
What lessons can we learn from this first attempt?
- The motion that went through had first been tabled in January. It had to wait until now to make progress. Our motion, tabled in April, might need to go on a similar journey before getting a debate slot.
- Whenever our motion comes back for consideration by the Business Committee, it’s likely to be in competition with others. So how can we give it the best chance of success?
- We need to continue to lobby our MSs, to raise their awareness and understanding of why it’s so important – tell them about our own experience of the illness and its impact on our lives, and the adequacy or otherwise of the provision we’ve received from the NHS (and/or Social Services / Education) – and to persuade more of them to get behind the motion. Find out how to contact them. Template letter below
“Thanks to all of you who are continuing to support this effort!”
To propose 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% 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.
Maeve Boothby O’Neill: Prevention of Future Deaths Report
Tabled By
Adam Price Carmarthen East and Dinefwr
Supporters
Cefin Campbell, Mid and West Wales, on: 01/05/2025
Hefin David, Caerphilly on: 30/04/2025
Jane Dodds, Mid and West Wales on: 28/04/2025
Joel James, South Wales Central on: 29/04/2025
Llyr Gruffydd, North Wales on: 01/05/2025
Luke Fletcher, South Wales West on: 30/04/2025
Mark Isherwood, North Wales on: 29/04/2025
Mike Hedges, Swansea East on: 30/04/2025
Rhys ab Owen, South Wales Central on: 02/05/2025
Sioned Williams, South Wales West on: 30/04/2025
Template letter
Dear (MS name)
I am writing as your constituent to urge you: Please, add your support to Adam Price’s motion for a Member Debate on Severe and Very Severe ME: https://record.senedd.wales/Motion/8884
We hope the motion will be considered by the Business Committee in early June, so your indication of support is needed now.
(Add a brief explanation of why this is important to you personally – your own experience of ME…your experience of NHS provision for ME in Wales)
I would be grateful if you could confirm whether or not you have formally added your support for Motion 8884.
Thank you
Yours sincerely
(Your name, address and telephone number – all required)
“There will be other opportunities for our motion to go forward. We’re waiting to hear whether there will be a chance in June before the Senedd goes into Summer Recess between 21 July and 14 September.
