Severe ME Difrifol Cymru

28/09/2026

Do you live in Wales? Want to find out what the new Welsh Gov funded ME and Long Covid services are offering for patients at local level?

Come and join the next ME Voices Wales webinar on Friday October 2nd 12.30-1.30pm.

Swansea Bay University Health Board’s ME/Long Covid Team will give a presentation about their service and answer your questions.

You don’t have to be in the Swansea Bay UHB area to be there – it’s good to find out what’s going on wherever you live in Wales. ME Voices Wales is about building a stronger ME voice at both local and all-Wales level, so please come along if you can.

Register here: 5a62da96-144c-4f50-a483-22b7d59b12a7@02b9cc2d-367d-482a-9831-f9b347e38272?source=copyLinkLegacyShareLinkDialog" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/5a62da96-144c-4f50-a483-22b7d59b12a7@02b9cc2d-367d-482a-9831-f9b347e38272?source=copyLinkLegacyShareLinkDialog

More info: https://www.wames.org.uk/mevw-webinar-5-swansea-bay-uhb-2-oct-2026/
Ydych chi’n byw yng Nghymru? Hoffech chi ddarganfod beth mae'r gwasanaethau ME a Covid Hir newydd a ariennir gan Lywodraeth Cymru yn cynnig i gleifion yn lleol?

Dewch ac ymunwch â'r webinar nesaf gan Lleisiau ME Cymru - Dydd Gwener, Hydref 2il 12.30-1.30yp.

Bydd Tîm ME/Covid Hir Bwrdd Iechyd Bae Abertawe yn rhoi cyflwyniad am eu gwasanaeth ac yn ateb eich cwestiynau. Nid oes rhaid i chi fod yn byw yn ardal Bae Abertawe i fod yno – mae'n dda gwybod beth sy'n digwydd ble bynnag chi'n byw yng Nghymru. Mae Lleisiau ME Cymru am adeiladu llais ME cryfach ar lefel leol a drwy Cymru gyfan, felly dewch ac ymunwch.

01/09/2026

There’s still time to sign up for tomorrow’s webinar with Cardiff & Vale’s ME / Long Covid Service! Registration closes at 9am tomorrow (02/09/26)

1e53051a-f595-438a-bc17-67be466b4083@02b9cc2d-367d-482a-9831-f9b347e38272" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/1e53051a-f595-438a-bc17-67be466b4083@02b9cc2d-367d-482a-9831-f9b347e38272

Mae yna dal amser i gofrestru ar gyfer gweminar yfory gyda Gwasanaeth ME / COVID Hir Caerdydd a'r Fro! Mae cofrestriad yn cau am 9y.b. yfory (02/09/26).

15/08/2026

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!

https://petitions.senedd.wales/petitions/247069

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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.

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 c...

31/07/2026

🔹Meeting with Welsh Health Minister🔹

On 28 July, 4 groups - Severe ME Difrifol Cymru, Long Covid Support, WAMES and Action for ME - met with Mabon ap Gwynfor, the new Welsh Minister for Health & Care. He’s previously spoken up for people with ME, including in last December’s Senedd debate. We appreciate him arranging this meeting so soon after taking office. The 4 groups worked together to agree these Key Asks:

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.

2: Appoint an All-Wales Clinical Lead/Medical Consultant 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.

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.

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.

The unmet need across all severity levels was highlighted. Mabon acknowledged the long standing frustration felt by people with ME and LC at the lack of understanding and appropriate provision within the NHS - what’s been done has been done to us rather than with us. He recognised our wish as patients and carers to help shape solutions and will get back to us by November. In the interim, please write to enlist the support of your MSs.

Photo taken when we spoke to Mabon at Y Farchnad in July 2025.

29/06/2026

24/06/2026

Don't miss next week's ME Voices Wales webinar when Hywel Dda UHB will share how their LC & ME/CFS Service can support people living with ME/CFS in Ceredigion, Carmarthenshire & Pembrokeshire. Mon 29 June, 1230-1330.

Register in advance: https://tinyurl.com/5y8btxpj
[email protected]

24/06/2026

Peidiwch â cholli gweminar ME Voices Wales yr wythnos nesaf pan fydd BIP Hywel Dda yn rhannu sut y gall eu Gwasanaeth LC a ME/CFS gefnogi pobl sy’n byw gyda ME/CFS yng Ngheredigion, Sir Gaerfyrddin a Sir Benfro.

Dydd Llun 29 Mehefin, 12:30-13:30.

Cofrestrwch ymlaen llaw: https://tinyurl.com/5y8btxpj
[email protected]

17/06/2026

Do you live in Wales? Want to find out what the new Welsh Gov funded ME and Long Covid services are offering for patients at local level?

Come and join the next ME Voices Wales webinar on Monday 29th June 12.30-1.30pm.

Hywel Dda Health Board’s ME/Long Covid Team will give a presentation about their service and answer your questions.

You don’t have to be in Hywel Dda to be there – it’s good to find out what’s going on wherever you live in Wales. ME Voices Wales is about building a stronger ME voice at both local and all-Wales level, so please come along.

Register here: b919a555-2bcc-4413-9c84-bf790e8ec518@02b9cc2d-367d-482a-9831-f9b347e38272" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/b919a555-2bcc-4413-9c84-bf790e8ec518@02b9cc2d-367d-482a-9831-f9b347e38272

More info: https://www.wames.org.uk/mevw-webinar-hywel-dda-29-june-2026/
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Ydych chi’n byw yng Nghymru? Hoffech chi ddarganfod beth mae'r gwasanaethau ME a Covid Hir newydd a ariennir gan Lywodraeth Cymru yn cynnig i gleifion yn lleol? Dewch ac ymunwch â'r webinar nesaf gan Lleisiau ME Cymru - Dydd Llun 29ain Mehefin 12.30-1.30yp.

Bydd Tîm ME/Covid Hir Bwrdd Iechyd Hywel Dda yn rhoi cyflwyniad am eu gwasanaeth ac yn ateb eich cwestiynau. Nid oes rhaid i chi fod yn byw yn ardal Hywel Dda i fod yno – mae'n dda gwybod beth sy'n digwydd ble bynnag chi'n byw yng Nghymru. Mae Lleisiau ME Cymru am adeiladu llais ME cryfach ar lefel leol a drwy Cymru gyfan, felly dewch ac ymunwch.

Cofrestrwch yma: b919a555-2bcc-4413-9c84-bf790e8ec518@02b9cc2d-367d-482a-9831-f9b347e38272" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/b919a555-2bcc-4413-9c84-bf790e8ec518@02b9cc2d-367d-482a-9831-f9b347e38272
Mwy o wybodaeth: https://www.wames.org.uk/mevw-webinar-hywel-dda-29-june-2026/

Register now for the ME Voices Wales webinar on Mon 29 June, 1230-1330.

Hywel Dda UHB will share how their LC & ME/CFS Service can support people living with ME/CFS in the 3 counties of west Wales: Ceredigion; Carmarthenshire; Pembrokeshire.

https://tinyurl.com/5y8btxpj [email protected]

18/04/2026

The first ME Voices Wales self-management webinar: Wed 22 April 12.30-1.30pm

ABUHB's Symptom Management service will explain what support they can give people with ME/CFS. Please share

Register here: https://tinyurl.com/mwkvbnp9

23/03/2026

Meleri Williams has been speaking to families who say they feel "invisible".