‘Living in darkness’: Senedd shines light on Wales’ ‘invisible’ ME crisis

Joe Woods

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.

Plaid Cymru’s Adam Price shared the harrowing story of a constituent who needs palliative care aged 33 to highlight the devastating impact of myalgic encephalomyelitis (ME).

The condition 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.

Leading a debate on Wednesday (December 10), Mr 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.

‘Thirty years of neglect’

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, who sits as an independent, raised the case of a 41-year-old constituent who has been housebound since 1999 and 95% bedbound since 2009.

He quoted her mum as saying: “She has received 30-plus years of neglect, abuse and being ignored, just because professionals will not leave their personal beliefs at the front door.”

Calling for more specialist support, the South Wales Central Senedd member said his constituent told him the life-changing illness made her family feel invisible.

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

‘We’ve got to do something’

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.

Labour’s Julie Morgan warned of a lack of any ME services in Cardiff and the Vale. “We’ve got to do something about it,” she told Senedd members.

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.

She told the chamber: “Just over five years ago, a constituent of mine was healthy, active, studying at university, enjoying sports and music.

“In just the space of a few years, their life has been completely transformed. They’ve gone from independence and an active social life to being bedbound – unable to interact with friends and family – and becoming reliant on care for every aspect of their daily living.”

‘Adferiad’

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.”