No Volunteers – no WAMES!

WAMES is entirely volunteer run. But what does that mean?

What do volunteers do for WAMES?

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!

Could YOU be a volunteer?

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!

Disabled People’s Rights – have your say!

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:

• embedding and understanding of the Social Model of Disability
• access to services
• independent living: social care
• independent living: health
• travel
• employment and income
• affordable and accessible housing
• children and young people
• access to justice
• wellbeing

Closing date

The consultation is open until 7 August 2025.

 Take part in a variety of ways:

• Draft Disabled People’s Rights Plan | GOV.WALES
• Cynllun Hawliau Pobl Anabl drafft | LLYW.CYMRU

Read comments:

• Welsh government’s disability rights plan ‘is a smokescreen’ to hide lack of teeth and targets – Disability News Service
• New action plan to help people living with disabilities but campaigners say its taken too long – Latest From ITV News

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

WAMES Annual General Meeting 2025

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

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.

Marjorie Crispin – fondly remembered

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)

Clinical Care Guide: Managing ME/CFS, Long COVID & Infection-Associated Chronic Conditions (IACCs)

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:

• A structured approach to assessment and management
• Guidance on key diagnostic tools and function-based assessment
• Condition-specific treatment strategies
• Disability and accommodation supports
  CME opportunities and additional educational resources

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

A Roadmap to Better Care

ME: Challenge the myths, champion the facts!

On World ME day 12 May 2025 we invite you to join us in debunking 6 of the myths about Myalgic Encephalopmyelitis (ME/CFS)

Myth 6: Long COVID is entirely different to ME

Fact: Many Long COVID patients have symptoms that match ME

Since the COVID-19 pandemic, researchers have found that a large number of people with persistent Long COVID meet the diagnostic criteria for ME. Many experience Post-Exertional Malaise (PEM) – an extreme worsening of symptoms after even minor physical or mental exertion which is the core symptom of ME.

Studies highlight the biological similarities between the two diseases, reinforcing the need for integrated research and clinical approaches for these two conditions as well as other post-infectious syndromes.

Download the ME Factsheet 
English           Welsh

English easy-formatting (useful for text-speech software)

#WorldMEDay      #MyalgicE       #MEAwareness

ME: Heriwch y mythau, hyrwyddwch y ffeithiau!

Ar Ddydd ME byd 12 Mai 2025, rydym yn eich gwahodd i ymuno â ni i ddadlau 6 o’r chwedlau am ME (ME/CFS).

Myth 6: Mae COVID Hir yn hollol wahanol i ME

Faith: Mae gan lawer o gleifion COVID Hir symptomau sy’n cyfateb i ME.

Ers y pandemig COVID-19, mae ymchwilwyr wedi canfod bod nifer fawr o bobl â COVID Hir parhaus yn bodloni’r meini prawf diagnostig ar gyfer ME.

Mae llawer yn profi Anhwylder Ôl-Ymarfer (PEM)—gwaethygiad eithafol mewn symptomau ar ôl hyd yn oed fân ymdrech gorfforol neu feddyliol sef PEM, symptom craidd ME.

Mae astudiaethau’n amlygu’r tebygrwydd biolegol rhwng y ddau glefyd, gan atgyfnerthu’r angen am ymchwil integredig a dulliau clinigol ar gyfer y ddau gyflwr hyn yn ogystal â syndromau ôl-heintus eraill.

Lawrlwythwch y daflen ffeithiau ME

English           Welsh

English easy-formatting (useful for text-speech software)

#WorldMEDay      #MyalgicE       #MEAwareness

ME: Challenge the myths, champion the facts!

On World ME day 12 May 2025 we invite you to join us in debunking 6 of the myths about Myalgic Encephalopmyelitis (ME/CFS)

Myth 5: Doctors cannot help people with ME

Fact: Doctors can help people manage ME symptoms.

While there is no cure for ME, there are compassionate ways to help patients manage their symptoms, in addition to pacing to prevent Post-Exertional Malaise (PEM).

Treating co-existing conditions and providing medications to address sleep disturbances, pain, and cardiac and neurological issues can offer significant relief. Offering at-home visits, online consultations and palliative care can make a big difference to someone suffering from Severe ME.

Download the ME Factsheet 
English           Welsh

English easy-formatting (useful for text-speech software)

#WorldMEDay      #MyalgicE       #MEAwareness

ME: Heriwch y mythau, hyrwyddwch y ffeithiau!

Ar Ddydd ME byd 12 Mai 2025, rydym yn eich gwahodd i ymuno â ni i ddadlau 6 o’r chwedlau am ME (ME/CFS).

Myth 5: Ni all meddygon helpu pobl ag ME

Ffaith: Gall meddygon helpu pobl i reoli symptomau ME.

Er nad oes iachâd ar gyfer ME, mae yna ffyrdd tosturiol o helpu cleifion i reoli eu symptomau, yn ogystal â rheoli egni i atal PEM.

Gall trin cyflyrau sy’n cydfodoli a darparu meddyginiaethau i fynd i’r afael ag aflonyddwch cwsg, poen, a materion cardiaidd a niwrolegol gynnig rhyddhad sylweddol.

Gall cynnig ymweliadau yn y cartref, ymgynghoriadau ar-lein a gofal lliniarol wneud gwahaniaeth mawr i rywun sy’n dioddef o ME Difrifol.

Lawrlwythwch y daflen ffeithiau ME

English           Welsh

English easy-formatting (useful for text-speech software)

#WorldMEDay      #MyalgicE       #MEAwareness