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The helpline will be closed from 5pm Thursday 2 April – 10am Tuesday 7April 2026.
Normal hours are 10am – 7pm
Feel free to email queries and we will reply as soon as possible.
The Samaritans can be contacted for emotional support 24 hours a day, 7 days a week.
English – 116 123 – free number (24 hours a day, 7 days a week)
Cymraeg – 0808 164 0123 – free number (7pm-11pm – check times on the website)
Meic Cymru – Children and young people up to age 25 can also contact Meic in English or Welsh by phone, email, SMS text and instant messaging.
8am to midnight, 7 days a week
FREEPHONE: 080880 23456
TEXT: 07943 114 449
IM/Webchat: www.meiccymru.org
CALM – Campaign against living miserably – 365 days a year
Helpline 5 pm to midnight
Freephone: 0800 585858
Webchat: www.thecalmzone.net/
On 23rd March 2026 severe ME/CFS became a major news story on the BBC in Wales. Reporter Meleri Grug Williams exposed the suffering and lack of healthcare services when she interviewed parent carers. This led to many BBC and local radio stations picking up the story.
BBC news: Our son loved the outdoors – invisible illness means he now can’t walk or talk
A news article featured Myfanwy and Charlie Sleep from Swansea who watch their once active 28-year-old son lying in bed every day, unable to walk or talk. Tomos is one of thousands with the condition in Wales who campaigners say are “invisible”, with healthcare services described as “a desert” for those most severely affected. Fflur Evans and Alwen Davies also shared their stories. The Welsh government said proposals for an all‑Wales specialist, an expert group and national standards were being “actively considered”.
BBC Radio Wales: ME/CFS families say they feel invisible
[7m 50] Interviews with parent carers Myfanwy and Charlie Sleep and Rob Messenger. Dr BinitaKane and Physiologist Claire Jones from Betsi Cadwaladr UHB also comment]
BBC Radio Wales: Breakfast Today
The invisible illness of severe ME – Carer Myfanwy talked about her son Tomos’ inability to walk or talk and Sylvia from WAMES discussed caring for her daughter Michelle for decades and the lack of services for severe ME in Wales. Starts @1h16 [7 mins]
BBC Radio Wales: The Phone In with Jason Mohamed
5 people phone in with their ME stories and Dr Shepherd joined the progratalks about his and gives an explanation of the illness. Starts @11mins. Sylvia and Rob spoke at @1h20.
BBC Wales news: Severe ME/CFS
Tomos Sleep, a 28-year-old from Swansea, has been bedbound since late 2023 following a severe deterioration in his ME/CFS. His mother cares for him full time, and his condition was too severe to film. The report also features campaigner Rob Messenger, whose two adult children have lived with ME since their teens, he says that specialist provision across Wales is worse than a postcode lottery. [3 min 21]
Well done to all who spoke to the media, both on the record and behind the scenes! Some are part of the carers group SMEDC who supported Adam Price MS to prepare for the Senedd Debate.
Your stories make a difference. WAMES uses them as we advocate for equitable services shaped by NICE guidelines, for all people with ME in Wales.
Read more about the postcode lottery for people with ME/CFS in the WAMES report: A Patchwork of Progress, Regional Variations and Gaps
Find out more about NHS services in your area by attending a ME Voices Wales Self-management webinar
The group invites people with ME, family & carers to join them in Coleshill Social Centre, Llanelli for their bi-monthly meetings.
in the Coleshill Social Centre, Coleshill Terrace, Llanelli SA15 3BT. The entrance is round the left side.
More info: John James 01267 233793 [pm only] rjames939@btinternet.com
2026 Meetings: usually on the 1st Saturday of every second month at 2 pm
February 7th
April 9th
June 6th
August 3rd
October 5th
November 30th
ME Voices Wales is launching a new series of lunchtime webinars shining a light on what support people with ME/CFS can expect from NHS Wales.
Each session will feature an in‑depth presentation from an NHS service team, followed by a live Q&A. You’ll be able to submit questions before, during, and after the session, and the team will answer as many as possible during the hour.
📅 22 April 2026
🕧 12:30–13:30
🏥 Featuring Aneurin Bevan UHB’s Symptom Management Service
An unmissable opportunity for residents of Gwent to hear directly from the team delivering ME/CFS care in your area.
More Health Boards are already on board, and dates for their sessions will be announced shortly:
We’ll be sharing updates widely through WAMES, FTWW, NDW, SMEDC and other social media channels.
Want to be the first to hear?
📧 Sign up for the ME Voices Wales e‑newsletter:
mevoiceswales@gmail.com
WAMES is pleased to announce that we are now an affiliate member of Disability Wales.
What is Disability Wales?DW is the national membership body of Disabled People’s Organisations (DPOs) in Wales, striving for the rights of all disabled people.
‘Our vision is for an inclusive, equitable and barrier free society.’
Currently WAMES does not meet the criteria for a DPO as our constitution does not stipulate that disabled people are in the majority, so we cannot be a full member of Disability Wales.
A Disabled Peoples Organisation (DPO) is run and controlled by Disabled people, with it being a constitutional requirement to have the majority of the management committee and membership to identify as disabled, at least 51%.
When referring to the definition of disability, DPOs use the Social Model, which identifies that it is the barriers made by society that disable people, not their individual impairments, neurodivergence or health conditions.
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. UK gov
Not everyone with ME would consider themselves to be substantially affected long-term by our illness or impairment. Severity of illness varies widely and health improvement is possible for some. Others however recognise they are no longer able to participate in society in the same way they used to, like others with different ullnesses and impairments.
DW see their remit as including:
WAMES fully shares DW’s vision of ‘an inclusive, equitable and barrier free society.’
We want to see people with ME able to take part in society as much as they wish, in spite of energy limitations, restricted mobility, sensory sensitivities etc.
We are keen to add our voice to others to make this a reality and to learn from them.
WAMES will consider whether affiliate membership is enough or if we should change our constitution.
jan@wames.org.uk helpline@wames.org.uk
WAMES will be holding our annual business meeting via Teams on Saturday 25 April 2026 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@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.
WAMES sent out a survey to NHS Wales Adferiad Services in September 2025, and received responses from all 7 Health Boards between October 2025 and January 2026.
We wanted to know:
♦ what stage the development of Services for people with ME/CFS had reached
♦ which ages and illness severity was being catered for
♦ how the Services operate and can be accessed
♦ whether the management recommendations from the 2021 NICE guideline for ME/CFS were being implemented
All Health Boards responded, though currently only 6 have a Service which offers support to a range of conditions including Long COVID and ME/CFS.
Health Boards have been developing their Adferiad services to include ME/CFS since March 2023 when the Welsh Government allocated extra money for that purpose.
While it is clear that a lot of progress has been made, the Report reveals that 3 years later Services are at variable stages of development, with 3 still to launch fully. One has launched and closed just over a year later.
♦ Services do not cater for people of all ages and severities
♦ Referral routes into the services vary. Only 2 services so far accept self referrals
♦ Multidisciplinary teams with varying ranges of specialisms cater for
multiple conditions, not just ME/CFS.
♦ Services vary in their ability to implement all the NICE guideline
management recommendations
♦ There is under-use of ME specific assessment tools and no
standardisation in which other tools are used across services
♦ Availability of information and communication methods vary
♦ Access to diagnosis and confirmation of diagnosis varies.
Welsh services have made progress, but ME/CFS services remain a
patchwork. Without medical national leadership and consistent
standards, tens of thousands of people will continue to fall through the gaps. This isn’t just variation. It’s inequality.
WAMES is grateful for the cooperation of the Health Boards and will continue to discuss patient needs and ask for equity in healthcare with them, NHS management and the Welsh Government.
Please help us by continuing to send to WAMES your comments, what you need from a Service and experiences of attending the Services: jan@wames.org.uk
A Patchwork of Progress, Regional Variations and Gaps
WAMES wishes you the best possible Christmas & New Year festivities! Thank you for your support in 2025.
WAMES volunteers, both people with ME and carers, will be taking some much needed time off over the festive period so we can start the new year refreshed (hopefully!).
WAMES helpline hours
helpline@wames.org.uk
0290 2051 5061
Closed: 23 December – 4 January
Reopen: 5th January
Feel free to email queries and we will reply as soon as possible.
The Samaritans can be contacted for emotional support 24 hours a day, 7 days a week.
English – 116 123 – free number (24 hours a day, 7 days a week)
Cymraeg – 0808 164 0123 – free number (7pm-11pm – check times on the website)
Meic Cymru – Children and young people up to age 25 can also contact Meic by phone, email, SMS text and instant messaging.
8am to midnight, 7 days a week
FREEPHONE: 080880 23456
SMS TEXT: 84001
IM/Webchat: www.meiccymru.org
CALM – Campaign against living miserably – 365 days a year
Helpline 5pm to midnight
Freephone: 0800 585858
Livechat & Whatsapp
Webchat: www.thecalmzone.net/
WAMES is grateful to Adam Price MS and the other MSs who spoke and supported the Senedd Debate on severe ME on Wednedsay 10 December.
Adam Price MS began with 5 Asks:
Watch the debate Read the transcipt Read the Motion
Mark Isherwood – ME remains significantly under-recognised. Inconsistent data, under-diagnosis and the absence of comprehensive research into its societal and economic impacts mean that the full scale of the illness is still not well understood. It has long contributed to a lack of co-ordinated support and inadequate services for those affected.
John Griffiths MS raised the harmful assumptions about physical and mental capacity from healthcare professionals, who often fail to realise the fluctuating nature of the condition, the lack of COVID vaccination for people with ME and the need for the social model of disability to be applied as society and systems fail to accommodate ME needs.
Mabon ap Gwynfor MS – highlighted the stigma which belittles the conditionand the risk of inconsistent care and postcode lottery without a clear national strategy. He also referenced WAMES’ Vision for healthcare services.
Mike Hedges MS asked the government to ensure there were specialist services containing a range of healthcare professionals with training and experience in accessing, diagnosing, treating and managing ME/CFS, as outline in NICE.
Sioned Williams MS highlighted that Adferiad services are still not reaching many of those who need it the most and called for a dedicated expert group in Wales for ME.
Julie Morgan MS spoke about the unpaid carers who spend their lives supporting people who are suffering from ME, and the problems with access to benefits, access to medication, and lack of specialist medical knowledge. She highlighted the MIssing Millions and Cardiff based support group MESiG’s previous awareness raising.
Rhys ab Owen MS metioned how ME affects the whole family, expecially when children become ill, the danger parents face with child protection referrals, due to misunderstanding, and the feelings of being invisible. He also asked why the 2014 Task & Finish Group recommendations had not been implemented, as many of them were included in the Motion.
Luke Fletcher MS wants Wales to lead in research, because this is a massive blind spot in the fight against ME and it is massively underfunded. He called for no more warm words, as in the Task and Finish Group report, but action.
Jenny Rathbone MS believes the medical profession hasn’t caught up with how widespread ME is and that medical professionscan’t try to deny that people have got the issue, simply because they don’t understand it. There has to be continuity of care so that people haven’t got to repeat their story.
Delyth Jewell MS highlighted that the constituents who talked to her explained how they were going to suffer after their meetings – the price they have to pay for advocating for themselves. Others should be speaking not for them, but with them. They deserve better.
Altaf Hussain
Cefin Campbell
Heledd Fychan
Jane Dodds
Joel James
Llyr Gruffydd
Rhun ap Iorwerth
Sian Gwenllian
For: 32 Against: 0 Abstain: 15
WAMES thanks Adam Price MS and the other MSs who spoke and supported the Senedd Debate on severe ME on Wed 10 Dec. It was good to hear so many give a voice to people without one.
We welcome the Health Secretary’s recognition of the need to provide an equitable health service and a willingness to explore Wales’ involvement in ME/CFS research.
We believe he is over optimistic about the success of Adferiad services for people with ME so far, and the extent that they are guided by evidence and people’s lived experience.
However we look forward to finding out how WAMES can work more with the Welsh Government and NHS Cymru, so that “no-one living with ME or other post-infection associated illnesses is left behind”.
Thanks also to Rob Messenger for all his hard work in coordinating the patient voice and liaising with Adam Price MS
As a number of you missed the event on Friday 28th November 2025, ME Voices Wales has scheduled a shorter repeat event on Monday 8th December, 12-1pm.
Do you have questions or thoughts about ME/CFS self management?Why is it necessary?
What is it?
Can anyone help me?
Join us as we share information, experiences and ideas about self-management and find out what is available to help online and within Wales.
More info: mevoiceswales@gmail.com
