Thousands of people in Wales are "invisible" to society and living behind blackout blinds – unable to bear light, sound or touch – the Welsh Parliament has heard.

Myalgic encephalomyelitis (ME) is a debilitating neurological illness characterised by severe fatigue and “brain fog”, often leaving people bedbound.

Even minor mental or physical activity can cause a severe crash in health known as post-exertional malaise.

Plaid Cymru’s Adam Price told the Senedd about 63,000 people in Wales live with ME or ME-like illnesses.

He said: “A quarter – some 15,000 – are severely or very severely affected: housebound or bedbound, reliant on others for the simplest acts of daily life.”

Mr Price pointed to studies putting the UK cost of ME in the billions each year, with Wales’ share running into hundreds of millions.

“Behind those numbers are lives on hold, jobs given up, degrees abandoned, parents turned full-time carers,” he said.

The Carmarthen East and Dinefwr Senedd member paid tribute to his constituent, Cerith, who was diagnosed at 11 and has lived in a hospital bed in a darkened room for four years.

He explained Cerith, who helped make the debate possible, is unable to speak or turn his body and requires tube feeding – a tragic example of how the condition can devastate lives.

Mr Price criticised a "postcode lottery" of care as he called for a clear national strategy.

The former Plaid Cymru leader praised the “Living Well” service in Betsi Cadwaladr but he noted that in other areas, funding for post-infection illnesses had been "absorbed" into wider budgets – leaving patients with little more than a website for support.

His party colleague Luke Fletcher warned research has been “massively underfunded”, with £8m spent on research in 10 years compared with €500m in Germany.

Rhys ab Owen criticised the Welsh Government’s lack of progress following a report’s recommendations on ME and fibromyalgia in 2014.

The Conservatives’ Mark Isherwood similarly said Wales should have moved ahead with a clear care pathway for people living with ME after new NICE guidelines issued in 2022.

And Plaid Cymru’s Sioned Williams said ME can be as disabling as late-stage multiple sclerosis or advanced cancer but receives not a fraction of the understanding nor funding.

Labour’s Julie Morgan warned of a lack of any ME services in some areas.

“We’ve got to do something about it,” she said.

Responding to the debate, Jeremy Miles acknowledged that people affected by the “often overlooked and sometimes ignored” condition have felt invisible for years.

The health secretary defended the Welsh Government’s record, pointing to an £8m-a-year investment in the ‘Adferiad’ recovery programme.

But he conceded there is “more to do” for those with the most severe symptoms.

Mr Miles committed to considering the cross-party motion’s calls for an all-Wales specialist, the establishment of an expert group and the development of national standards.

He said: “We will continue to be guided by evidence, listen to those with lived experience and ensure no-one living with ME or other post-infection associated illnesses is left behind.”