Tell ME Voices Wales what matters to you
The ME Voices Wales project was launched in May 2025 by WAMES and FTWW with 2 virtual events.
After hearing about past advocacy efforts in Wales, participants were asked to select the area of life that concerned them most and what they would like to see as the primary focus of advocacy efforts in Wales.
The majority thought that better, more appropriate healthcare and medical education should be the project’s advocacy priority. The comments in the subsequent discussion groups made it very clear that a good healthcare service for ME/CFS begins with much better accessibility to educated GPs, a choice of consultation formats in primary care and referrals to well-trained specialist care.
Other areas were also mentioned as lacking in understanding of ME/CFS, making life more difficult for people with ME.
Take the survey: ME Voices Priorities Survey
Lots of you were unable to join us at the events but we woud like to hear from you too. Please help us get a wider understanding of what concerns you – take the online survey and rate these in order:
- access to appropriate healthcare
- social care, aids & support at home
- isolation & loneliness
- youth education & vocational training
- benefits &/or cost of living
- accessibility to local services
- level of Welsh language info & support for ME
- discrimination of those with disability & chronic illness
- support for carers and families
Help ME Voices Wales gather information about what it is like to live with ME in Wales!
As the project learns more, we will then decide how to present it in ways that decision makers and service commissioners can use. We will aim to conduct surveys, gather stories, write reports and presentations, hold events and discussion groups, and more. The more people who join us, the quicker we can all speak out and the more representative the ME voice will be.
Individuals, local support groups, national organisations and alliances all need accurate information before they can advocate or speak out on behalf of people with ME.
Advocacy is taking action to support people to say what they want, secure their rights, pursue their interests and obtain the services they need.
Advocacy providers and advocates work in partnership with the people they support and take their side, promoting social inclusion, equality and social justice’. [Advocacy matters]
Keep up to date with the ME Wales project. Join the mailing list for the e-newsletter. mevoiceswales@gmail.com
