Take urgent action so those with Severe Myalgic Encephalomyelitis in Wales are no longer left without vital medical care
Open for signatures until 10 February 2027.
3,551 signatures
- More than 250 signatures: considered by the Petitions CommitteeReached
- More than 10,000 signatures: considered for a debate in the SeneddNot reached
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.
More details
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.
Signatures by constituency
The Senedd's petitions website lists 2,046 of the 3,551 signatures under a Senedd constituency.
| Constituency | Signatures |
|---|---|
| Gwynedd Maldwyn | 574 |
| Gŵyr Abertawe | 304 |
| Caerdydd Penarth | 176 |
| Bangor Conwy Môn | 154 |
| Ceredigion Penfro | 146 |
| Sir Gaerfyrddin | 144 |
| Caerdydd Ffynnon Taf |