ME sufferer calls for more research
Maidenhead: 29-year-old says he is fighting to win back his life
A man with a chronic illness who has been confined to his bedroom for almost four years is calling for more research and funding into his debilitating disease.
Mark Lacey was diagnosed with Myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome, in 2019.
He first started experiencing symptoms including pain in his back and hips and stomach problems which left him struggling to drink water.
The 29-year-old, who lives in Birdwood Road, now spends all his time in pitch black darkness in his bedroom due to extreme light sensitivity.
He told the Advertiser that his quality of life has been taken away by the disease and more needs to be done to help understand the illness, which currently has no cure.
Mark said: “What we experience is so much more symptomatically than the common, misunderstood rhetoric of ‘isn’t that what old people have when they get a bit tired ?”.
“Just because you are young it no way guarantees your health.
“It sounds cliche, but health and happiness over money and materialism on every occasion.
“I fight all day and all night just to win back something that resembles my quality of life.
“I would usually downplay things and bottle everything up inside but there is no way I can stay silent with what I am experiencing.”
Mark’s mother, June, has now become his 24-hour carer and said the word chronic fatigue does not do justice to how devastating the illness is.
“He’s gone from going out with his friends, enjoying life and having fun to nothing. He can’t do anything. He can’t read, he can’t look at his phone. He’s living in complete darkness, laying in a bed,” she said.
June added that newly trained doctors do not seem to be aware of the severity of the disease and Mark has only found help from London-based ME specialist, Dr William Weir.
“There’s no cure and very little funding going into research. It’s just quite frightening. Millions of people are suffering with this illness but nothing is being done about it,” June said.
W For more information on ME and how to donate towards disease research, visit meresearch .org.uk