'I was a bedbound ME sufferer, but I can offer hope'

A man from Leatherhead who spent a decade bedbound with chronic fatigue syndrome said he is "learning how to interact with the world again".

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a condition which causes fatigue, sleep disturbance, cognitive difficulties, headaches, nausea and intolerance to lights and noise.

Kieran Barnaville, who is among the 404,000 people the ME Association estimates have the condition, spent years unable to speak or leave his bed as a teenager.

The 23-year-old, who deteriorated after contracting glandular fever during a rugby tour, said "everything shut down" as he felt "trapped inside" his own body.

Communication was initially limited to blinking, before Barnaville progressed to using a voice-assisted communication app.

He was home-schooled and later completed a university degree while still largely housebound.

He said: "One day I regained movement in my little finger. Then gradually movement returned to my arms and legs.

"About a year later I could speak again. It took another three-and-a-half years before I had full physical function."

This enabled him to use a mechanical wheelchair, and later he regained greater mobility and independence.

Today, more than a decade after becoming severely ill, Barnaville is working full-time for one of his brothers and is "learning how to interact with the world again".

He said: "Being able to make a cup of tea, cook dinner or walk my dog are things that mean so much to me now.

"If I can tell people what happened to me and give them hope, then that's worthwhile."

Barnaville continues to experience mild symptoms and considers himself someone who still has ME/CFS.

Martine Ainsworth-Wells, trustee and campaigns director at the ME Association, added: "Kieran's story offers an insight into the realities of living with severe ME and the long, often unpredictable nature of improvement.

"We are grateful to him for sharing his experience and helping to raise awareness of this misunderstood condition."

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