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Much of the work of WAMES involves ‘speaking out’, advocating and supplying information about ME.
That is not possible without people working in support roles like secretary, treasurer and trustee.
The Secretary and Treasurer keep the organisation functioning legally and they are part of the management team, called Trustees. Trustees share the responsibility for making decisions about what needs to be done and steer the organisation in the best direction. No charity can operate without them!
If you can easily balance your personal finances and enjoy planning and budgeting, then please consider doing the same for WAMES. Any additional knowledge and skills you might need can be picked up along the way.
Please note:
Join us to give a voice to people affected by ME in Wales!
From time to time WAMES needs short-term help or expertise for one-off or occasional activities, projects or events. Because there is so much we could be doing to speak up for people with ME, many admin tasks get overlooked, or take time away from much needed advocacy and support work. Some tasks are essential. Some, if completed, could really help us be more productive!
Volunteering doesn’t always mean giving up lots of time. All WAMES volunteers work from the comfort of their own homes and mostly at times that suit them. There are many opportunities available to suit even the busiest of people and also those with limited energy.
Examples of flexible volunteering tasks:
Let us know what your expertise or enthusiasms are and we can discuss the right opportunity for you! Maybe YOU could supply the missing piece in our work for people with ME in Wales.
Contact us for a chat: sharon@wames.org.uk jan@wames.org.uk
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.
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:
So, we are still ‘working for ME’ but more than ever are using our ‘voice for ME’!
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
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!
Caring About Equality
During Carers Week 2025, 9-15 June, WAMES is joining the call for a fairer society for all our unpaid carers.
The Caring about Equality report highlights the inequalities facing unpaid carers in the UK today and the steps needed to create a fairer society for carers.
Unpaid carers are the backbone of our society, propping up fragile health and social care systems and providing essential care to friends and family who need their support. Despite carers’ huge contribution to our communities, many carers still feel undervalued and unsupported.
Inequalities can negatively impact all aspects of carers’ lives, putting carers at a greater risk of poor mental and physical health, social isolation, financial hardship, and poverty. Far too often, carers miss out on opportunities in their education, careers, or personal lives, just because of their caring role.
The inequalities that carers face mean that:
Together let’s strive for an equal society, where carers can fulfil their own aspirations and lead healthy and financially secure lives.
WAMES is entirely volunteer run. But what does that mean?
For the past 25 years volunteers have enabled WAMES to speak out on behalf of people affected by ME. They have talked to politicians, health professionals, social services, benefits providers, teachers and more.
They have run the website, social media, produced documents, awareness materials, posters, leaflets and reports.
The helpline has enabled carers and people with ME to talk to, or email, other people with ME or a fellow carer to get support or information.
Behind the scenes volunteers have organised the finances, recruited and supported volunteers, done the paperwork, kept us legal, and applied for funding. They have basically kept us afloat.
Recently volunteers have been working with the ME Voices Wales project to help give people with ME, family and carers a bigger say in what happens to and for them.
WAMES says THANK YOU!WAMES relies on volunteers and we are immensely grateful to all those who have given their precious time and energy, whether that has been for years or months. It has all made a difference!
For health reasons our secretary and treasurer need to retire. If you would like to help with these essential roles in any way please get in touch with Sharon, our Volunteer Coordinator sharon@wames.org.uk
Help WAMES continue to be a voice for ME in Wales for another few years!
The Welsh Government has launched a consultation on its Draft Disabled People’s Rights plan, setting out “a positive ambition for advancing the rights and opportunities of all disabled people across Wales over the next decade”.
Goal: lasting change addressing barriers to inclusion
The plan is based on the work of the Disability Rights Taskforce, which brought together people with lived experience and expertise. It aims to address the challenges faced by disabled people in their everyday lives and outlines both immediate actions and long-term outcomes to create lasting change in how society addresses barriers to inclusion.
Who can take part?
Individuals, community groups, businesses and organisations, with particular emphasis on hearing directly from disabled people about their priorities.
Is ME/CFS a disability?
ME/CFS is listed as a specific medical condition in the 2010 Equality Act in the UK. Everyone with ME/CFS is not automatically classified as having a disability. This will depend on the severity of your condition.
You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities. [Gov.uk]
What does the plan cover:
Closing date
The consultation is open until 7 August 2025.
Take part in a variety of ways:
Read comments:
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.
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:
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.
Keep up to date with the ME Wales project. Join the mailing list for the e-newsletter. mevoiceswales@gmail.com
WAMES will be holding our annual business meeting via Teams on Saturday 7 June at 11.30 am. This is the opportunity for members to elect officers, oversee the finances and identify priorities for the coming year.
If you would like to become a member of WAMES and help us keep on course with our mission – to be the voice of people affected by ME in Wales – please contact Jan jan@wames.org.uk.
We will also be happy to discuss any of our volunteering needs if you would like to lend a hand in other ways.
Our Vision is for a Wales where adults and children with ME/CFS and PVFS and their carers are taken seriously and treated with respect, where diagnosis, treatment and services are accessible without a battle.
We were very sorry to hear of the death of Marjorie Crispin on 9th May 2025. We remember with gratitude the many years when she and her husband John organised and guided the Mid Wales ME Group.
She went out of her way to help those in the group, travelling around mid-Wales to lend a hand or a sympathetic ear. We always had a good laugh at the meetings and enjoyed visiting their calm home in the country, with lovely views.
Although the Group no longer exists, the work John and Marjorie began still continues in the group members they nurtured. The mid Wales ME group was a founding member of WAMES and they were very supportive of the national advocacy work.
Marjorie’s husband John died some years ago and she had latterly been living with family in East Sussex, enjoying their company and care. Our sympathies go out to them.
Many will remember Marjorie for the care and understanding she gave them.
We will all remember Marjorie with fondness and gratitutude for the good memories she has left us with.
Jan Russell (ex ME Group Librarian)
Tony Thompson (the tea boy who became John’s successor)
This clinical care guide has been developed by the OMF-supported Medical Education Resource Center (MERC) at Bateman Horne Center, Utah, USA. It aims to offer “a practical path forward—one grounded in clinical expertise, research, and the lived experience of patients.
The Clinical Care Guide condenses decades of in-house clinical experience and hundreds of lectures into clear, actionable guidance. It’s designed for any healthcare provider—regardless of specialty or time constraints—to confidently diagnose, support, and care for patients with ME/CFS, Long COVID, and related conditions.
For too long, people with ME/CFS and Long COVID have faced a healthcare system that wasn’t equipped to meet their needs. Even the most dedicated clinicians often lack the training or tools to support people with these complex, multisystem diseases.
Effective care requires a coordinated, cross-disciplinary approach that includes primary care, specialists, allied health professionals (PT, OT, SLP), behavioral health providers, and caregivers.
Equally vital is the clinician–patient partnership—one grounded in mutual trust, shared decision-making, and respect for lived experience. Together, these collaborations can help reduce the burden of illness, build clinical confidence, and move the field toward more equitable, compassionate care.
This toolkit provides:
The goal of this guide is to equip providers with clear, actionable tools to better support their patients’ care journeys and help improve both daily function and long-term health outcomes.”
Download the Clinical Care Guide
