ME/CFS families say they feel invisible
On 23rd March 2026 severe ME/CFS became a major news story on the BBC in Wales. Reporter Meleri 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 talks about his and gives an explanation of the illness. Starts @11mins
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
