Still speaking out!
Across the world today, people are raising their voices for those who cannot make themselves heard.
Severe and very severe ME/CFS can silence people — not metaphorically, but literally — leaving many without the strength to speak, sit up, or even tolerate light or sound.
Severe ME Day exists to make sure they are not forgotten by healthcare, social care, researchers, governments or society.
“For 6 months or so I couldn’t really talk at all. The muscles around my jaw didn’t have the energy to communicate even the smallest things… It is difficult to have a voice when the condition strips you of the ability to speak out.” — Juan Cortlett
Speaking out in Wales
WAMES continues to speak directly to Welsh Government ministers, NHS leaders and frontline staff. We tell them — clearly and urgently — that Wales needs trained professionals who understand how to provide safe care for people with severe and very severe ME/CFS.
We use your stories to show what needs to change. If you want your experience to help drive that change, tell Jan or Sylvia.
The Severe ME Carers Group (SMEDC) continues to push for the delivery of Adam Price MS’s five key asks from the Severe ME Debate in the Senedd (December 2025). These asks matter. They are achievable. And they would transform care for the people most affected.
“Severe and very severe ME/CFS represents one of the most profound states of disability found in medicine.” — Bateman Horne Center, USA
Do you need help to speak out — for yourself or someone you care for?
- Contact our helpline — we will listen, understand, and guide you to information, experts and advocates, where possible. 029 2051 5061
- Llais Cymru can help you raise a concern. Raising a concern about health and social care services
- Advocacy support is available to help you secure the social care you need – Contact us to find out more
- Choose the right resource to share with professionals — we can help you find the most effective guide or briefing. e.g. A Resource Guide for Clinicians or Safer Hospital care for severe ME
- Connect with others living with severe ME — shared experience builds strength and can give a louder voice – 25% Severe ME group #MEAction Severe ME Facebook Group
