ME Voices Wales – have your say!
How can people with ME in Wales have a louder voice?
Who do we want to listen to us?
What changes do we want to see take place?
How can we find out about things that affect us?
ME Voices Wales is an exciting new project to bring people together so we can listen to each other and work out ways we can communicate about things that are important to us.
Individuals and groups have been supporting each other and raising awareness of ME/CFS in Wales for decades. Now that there is more acknowledgement of the condition and people say they actually want to hear from us, WAMES and FTWW are inviting people with ME throughout Wales to join us and help us make a louder noise.
Numbers matter
Often WAMES is asked by services or politicians ‘how many members do you have’ & ‘where do they live’? The more members, the greater a reason for paying attention. WAMES is not a membership organisation, though from the beginning we have collected experiences and opinions to shape our advocacy work.
We think there could be over 65,700 people with ME in Wales, since so many developed ME following COVID, but how many want to be heard?
The more people that sign up, the bigger the impact we can make!
Whose voices do we want to hear?
Since Oct 2021 the description of ME in the NICE guideline is one we recognise. Anyone living in Wales with ME or suspected ME, as described by NICE, or who lives with, or cares for someone with ME, is invited to join us.
The NICE guideline definition (even though it is not perfect!) gives us a recognisable and acceptable identity.
What will the project do?
First we need to listen to each other so we can understand what we want to talk about.
We are therefore planning an initial on-line event / series of events to discuss, listen and for you to have your say. We are also considering using other virtual events, local get togethers, short questionnaires, snail mail and polls to gather information.
Then we need to present our voices in a way that our target audience (NHS, politicians…) will hear so we might produce reports, statistical diagrams, infographics, videos etc. Whatever is needed.
How can you get involved?
Sign up to be kept in touch with the project as it develops
you will be added to the e-news mailing list so you can find out what is planned. See contact details below
Join the initial on-line event/s
We’ll soon be sending out details of how to register.
Offer your help
can you help run virtual or f2f events OR devise surveys, diagrams or reports OR lead discussions OR something else we haven’t thought about yet?
Know people who are not online?
Give them a print-out of this announcement so they (or a carer) can contact us or they can phone us, and we will communicate through snail mail. We don’t want anyone to be left out!
Groups can become partners
any ME groups or groups in Wales with an interest in ME can offer their support, experience and expertise.
We look forward to hearing from you!
The Coach House, Frongog, Aberystwyth SY23 3HN
WAMES helpline: 029 2051 5061
Fabulous ideas!!!
Would love to take part!
Would like to try helping maybe in an actual (not virtual) face to face get together/meeting locally
Apologies if I’ve suggested something already in the notification & I haven’t picked up on it….
I think it would be a good idea to also include other people who are either carers, family members or loved ones who have people with ME to come to the get together or the virtual meetings so they can learn to understand more possin how to help the individual they know, etc. also they can give their feedback to us in highlighting their problems with trying to support or coexist with someone who has ME in their lives. Pooling thoughts & solving things in a synergetic way.
I have had ME for 11 years, people genuinely don’t understand the condition.
I have been offered nothing by the nhs in all this time.
I forced myself to stay in work but had to reduce to 1 shift a week, doing that meant about 5 days in bed and no life until I was forced to retire from the NHS almost 5 years ago.
I am now facing losing my pip as it is scored so low for everybody but especially those with ME and mental health issues.
When I was working I found my colleagues were resentful of the time off I was forced to take due to the condition.
Great ideas .
Would like to be part of this as my son has severe ME.
Thank you for your great work.