Severe ME Difrifol Cymru

08/08/2026

Shauna, a member of Severe ME Difrifol Cymru, has organised this petition in support of her partner, Row, and all those with Severe and Very Severe ME in Wales. Please sign it and share widely. Every signature counts!

Petition: Take urgent action so those with Severe Myalgic Encephalomyelitis in Wales are no longer left without vital medical care

Service provision for people with Myalgic Encephalomyelitis (ME) remains inconsistent across Wales. In particular, major concerns persist regarding access for those with the severe form of the condition, leaving some families facing life-impacting decisions, without medical guidance.

Sufferers are confined to dark rooms, require 24/7 care, some unable to speak, feed themselves, tolerate light or sound, or even sit up.

Proposed actions will ensure people with Severe ME can safely access evidence-informed medical care and improve their chances of recovery.

We urge the government to implement both immediate and long-term support for those in desperate need.

Actions co-produced by: Severe ME Difrifol Cymru (SMEDC), Welsh Association of ME and CFS Support (WAMES), Action for ME (AfME), Long Covid Support (LC Support).

1. Create a National Expert Group of health care professionals and people with lived experience to coproduce an All-Wales Strategy and Delivery Plan for ME and Long Covid, ensuring equity of service and compliance with NICE guidance (NG206 ME/CFS), across all ages and all severity levels.

2. Appoint an All-Wales Clinical Lead(s) / Medical Consultant(s) for ME and Long Covid to coordinate care across health boards, reduce regional variation, support complex cases, guide training and treatment, keeping Wales in step with emerging research.

3. Develop an ME/CFS and Long COVID Research Strategy to accelerate research in Wales through the Life Sciences Sector / Life Sciences Hub by 2027.

4. Consider long-term sequelae in future pandemic planning/ preventive strategies, reviewing Infection Prevention Control (IPC) guidance.

Please sign here and share as widely as you can!

28/07/2026

SMEDC and other ME and Long Covid Groups meet Welsh Health Minister

On 28th July, 4 ME and Long Covid groups - Severe ME Difrifol Cymru (SMEDC), Long Covid Support , WAMES and AfME - met with Mabon ap Gwynfor, the new Welsh Cabinet Minister for Health & Care.

Mabon has previously spoken out strongly on behalf of people with ME, including in last December’s Senedd debate on severe ME. We are grateful to him for arranging this meeting so swiftly after his recent appointment. The 4 groups, whose concerns and objectives overlap significantly, worked together to agree these Key Asks:

Key Ask 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), across all ages and all severity levels.
Key Ask 2: Appoint an All-Wales Clinical Lead(s) / Medical Consultant(s) 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.
Key Ask 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.
Key Ask 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.

These 4 Key Asks incorporate the 5 Key Asks from last December’s Senedd Debate on severe ME and add one with a greater focus on pandemic prevention and preparedness, recognising the historical neglect of ME (lack of research / understanding / treatments) which contributed to the huge numbers of people with post-viral Long Covid (approx 50% of whom now meet ME diagnostic

criteria). The Minister was fully engaged. He recognised the intense frustration that people with ME and LC have experienced over years at the lack of understanding within the NHS - that “…when things have been done, they have been done to you, not with you” - and our desire, as patients and carers, to be part of the solution. He committed to coming back to us by November with regard to how he intends to take things forward. The 4 groups were able to come together with a shared agenda and we hope that this will be a stepping stone to future collaboration - because we are ‘stronger together’. This also applies to the ‘ME community’ of patients and their families/carers in Wales. We need a stronger united voice.

Here are some ways you can contribute to that:

Sign the Senedd petition and share it with at least 5 others: https://petitions.senedd.wales/petitions/247069?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAcGRvZgJleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA85MzY2MTk3NDMzOTI0NTkAAadD4HfxDFnQk3ohk-PuqsRwbEOcpPb6Xe7V21gPnc45XFbWLWpRWY66mvzfaA_aem_PuB2vcNdCjWSFZ1l6NdMmw
Write to your constituency Senedd Members (MSs) asking for them to support. If you’d like some support with this, just drop a line to severeme.cymru@gmail.com and we can share an email/letter template and some info you can use or adapt as you wish.
Join the ME Voices Wales webinars: https://www.wames.org.uk/mevw-webinar-4-cardiff-vale-uhb-2-sep-2026/ - so far we’ve heard from Betsi Cadwaladr, Aneurin Bevan and Hywel Dda Health Boards about their ME services. Next up is Cardiff and Vale on Sept 2nd and Swansea on October 2nd.
We have to wait for the Minister to come back to us. In the meantime, we will continue to develop our ideas about ‘what good would look like’ in terms of service provision for people with ME at all levels of severity in Wales. Please tell us what you think at severeme.cymru@gmail.com.

10/12/2025

Welsh Senedd votes in favour of Motion 8884 - Severe/Very Severe ME!

Members of Severe ME Difrifol Cymru have been working with Adam Price, MS, for the past year to prepare for the debate, which took place on Wednesday 10th December.

You can watch the debate here: https://tinyurl.com/mux4pkcr

or read the transcript: https://tinyurl.com/4aumbvja

Context: The Welsh Government (WG) is sharing £8.3m pa amongst its 7 health boards for the development of the Adferiad (Recovery) services for people with ME, Long Covid and other chronic illnesses. WG expects these services to be co-produced at local level and comply with NICE guidance. But, in the absence of a national strategy, a post-code lottery of provision is developing, and there is a danger that those with the most severe needs will continue to receive the least care.

Adam said:

“There are thousands of people in Wales whom we almost never see … because to stay alive they must live in darkness; behind blackout blinds, away from noise, unable to bear light, sound or even touch. They are the people with severe and very severe ME, and they are at the heart of this debate..”

We’re grateful for Adam’s commitment in bringing to the attention of the Senedd the needs of people with severe and very severe ME.

Five Key asks of the Welsh Government:

Bring together a National Expert Working Group – comprising HCPs and patient/carer reps to
Co-produce an All-Wales Strategy / Delivery plan to ensure equity of service and compliance with NICE guidance across all ages and ALL severity levels;
Appoint an All-Wales Clinical Lead – to support complex cases, advise Adferiad teams, guide training, and keep Wales in step with emerging biomedical evidence – with a clear ambition, as expertise grows to develop this into a full All-Wales consultant post;
Develop an ME Research Strategy – make Wales one of 5 proposed UK hubs so that research into the biomedical causes of / potential treatments for ME and models of care is integral to the development of the Adferiad services and linked to research collaborations across the UK and the world;
A Safety and Equity Guarantee for people with Severe and Very Severe ME – responding to the Prevention of Future Deaths Report of Maeve Boothby O’Neill with clear guidance for hospital admission and nutritional support;

Adam concluded:

…” If our politics is to mean anything, if this place is to mean anything, it's surely that those with the least power, at times in their lives the least energy, sometimes the least ability to speak for themselves, that we recognise them and their needs, and their need for us to care for them collectively as a society..above all, I hope that (patient name) and all the other families, and all those following this debate from darkened rooms, look back on today, they will be able to say, ‘That was when Wales began to see us, to understand us and to act’.”

Severe ME Difrifol Cymru also thanks:

the many who contacted and shared their lived experience of this devastating illness with their MSs, and those MSs who spoke in the debate on their behalf;
Jeremy Miles for his positive response on behalf of the WG, and to all those committed health professionals within the Adferiad Teams who are trying to do their very best for people with ME – we want to work with you;
For the Senedd as a whole which voted to carry the motion through unopposed.
WAMES, MESiG, ME Voices Wales, AfME, MEA, 25% ME Group and Long COVID Support for backing us - and because ‘We are Stronger Together’!

You can contact us at: severeme.cymru@gmail.com

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