A time for reflection – 2025 AGM
Every year we are required to hold an AGM and it always casts a bit of a shadow. It causes so much extra admin as we gather information for reports.
But every year we are reminded that it can be difficult to ‘see the forest for the trees’. Most of the year we are so involved in multiple activities that it is good to take a step back and assess what we have been involved with, what has borne fruit and what needs to happen next.
What sums WAMES up?
Our tagline or slogan has been ‘Working for ME in Wales’. And let’s face it, making the case for people with ME to be given helpful services has always seemed like hard work! ME is not easy for people to understand and the lack of medical support has not helped us to be taken seriously.
The remit we were given 25 years ago by the local support groups was to be ‘a national voice for ME in Wales’ and we have focussed on speaking out on behalf of the tens of thousands of families affected by ME/CFS and post-viral illness.
This year we decided to highlight that, and we have changed our tagline (or slogan) to ‘A voice for ME in Wales’. To make that voice more effective we also joined with other groups and individuals in the ME Voices Wales Project.
How is WAMES speaking out for ME?
We are always looking for ways to communicate accurate information about ME and about the need for better services. We have been providing information about ME and talking to lots of people that are either responsible for service development or supporting people with ME, who can advise us or influence that. In the last few years that has included:
- Welsh Government ministers
- Welsh Government Health Departments
- Women’s Health Cross Party Group
- NHS Executive & Clinical Networks
- Health Boards’ Adferiad service teams
- Cardiff & Vale Chronic Conditions Co-Production Group etc.
- NHS 111
- Alliances – such as the Wales Neurological Alliance, World ME Alliance, Fair Treatment for the Women of Wales, Disability Benefits Consortium
- Third Sector Groups – such the Wales Voluntary Council and local Voluntary associations
- Wales & Midlands Capita Stakeholders
- Advocacy groups – such as Llais Cymru, regional advocacy groups
- Charities and support groups providing support to people with ME and carers
So, we are still ‘working for ME’ but more than ever are using our ‘voice for ME’!
The future
Although progress is slow, we are pleased to see a greater awareness of ME/CFS develop in the NHS, a recognition that we need a national strategy, and the beginnings of services. Since ME/CFS was made a priority action in the Women’s Health Plan 2025-35, it has become a wider topic of discussion in the NHS and we will continue to contribute the ME voice to all those discussions.
During 2025-26 WAMES aims to continue to prioritise
- NHS Advocacy
- ME Voices project
- New WAMES Website
- Information sharing (social media, blogs, leaflets etc)
- Supporting Welfare reform actions
- Recruiting behind-the-scenes volunteers
There are many more issues we would like to be addressing but we need to be realistic. We are always keen to hear your stories and concerns and we welcome new volunteers to help us speak out. But, not every job is on the front line. We can only continue to speak out if there are people supporting the charity and its advocacy work behind the scenes. Watch this space for more information!
