John Siddle, PR Manager, ME Association.
THE mum of a teenager struck down by a devastating disease has spoken out about her daughter’s never-ending quarantine.
Chloe Ayers, 17, is bedbound with the devastating energy-sapping condition M.E. (myalgic encephalomyelitis).
She is among 265,000 Brits living with the incurable illness – also known as chronic fatigue syndrome – after contracting glandular fever as a three-year-old.
M.E. is a disease that can dramatically impact a person’s ability to function and is often triggered by an infection from which people never seem to recover.
It doesn't discriminate, affects all ages and ethnicities and there is no effective treatment.
Chloe, from Runcorn, Cheshire, is sadly among the 25% so severely affected that they are rendered housebound or bedbound.
Her mum Julie, 44, a social worker, told how their lives had been turned upside down since Chloe’s diagnosis four years ago.
The cruellest of existences
She said: “As a family, our lives have completely changed in every aspect.
“My daughter is so ill she has had to disengage with her education. She has been house-bound for three years and bed-bound for the majority of this time.
“Her last outing was to go for Christmas dinner at her grandparents for just one hour in 2018.
“She’s not been able to stay in close contact with her friends as she’s too ill and has not been out with her friends for three years.
“They have visited her on a few occasions, maybe once every six months.
“I have had to give up work to care for her. I have no family support and have spent days, months and years now at home with her.
“It is the cruellest of existences.”
Chloe, who has a brother, Ronnie, 21, was diagnosed at aged 13 but may have had the condition for years before. GPs can struggle to identify the condition because it cannot be diagnosed through blood testing.
M.E. causes extreme exhaustion, pain, brain fog, and a variety of other symptoms – with the cruel hallmark that they are made worse through bare minimal exertion.
Sufferers are often confined to their beds, unable to walk, and need help even to shower – an action that could then lay them low for hours, or even days.
There is no known cure – and worse still, there remain vast misconceptions – even in medical circles – that M.E. is ‘made up', ‘in the mind' or even ‘laziness'.
Julie said: “Prior to my daughter being taken ill I worked within the NHS facilitating hospital discharges.
Loneliness and isolation
“Now I am constantly looking after Chloe and I am speaking out because she is too poorly to have a voice.
“M.E. has stolen our happy times, our family times, all of our birthdays together. We haven't had holidays, days out or even meals out.
“It’s robbed us of days, weeks, months and years. My daughter has gone from being 14 to 17 and she has not lived a single day.
“I've not been able to watch her grow. She’s missing from all the family photographs. Her childhood has been taken away and all the life experiences she should have.”
While Brits are learning to self-isolate, Julie is lucky to see her daughter for more than a few minutes a day as she lies isolated from the world.
Julie added: “ME causes isolation at its worst. Isolation of the body, mind and spirit. Isolation from family and friends, isolation from the community, isolation from life.
“Chloe is a fan of Harry Styles but just going to a concert would make her desperately ill.
“I spend all my days worrying about her from the moment I wake up to the moment I go to sleep.
“I’ve had many sleepless nights looking at medical research to try to find answers, treatments, cures to help end this nightmare.”
Less than £1 is spent by the government on each M.E. patient each year, despite the condition being twice as common as MS (multiple sclerosis).
Julie added: “My experience is sadly that not many professionals have an understanding of this condition, what it is or how it impacts on the individual.
“I hope by speaking out it shines a light on these forgotten people.”
The ME Association
The ME Association is at the forefront of improving access to care, treatment and research and removing the disease’s stigma.
Chairman Neil Riley said: “Sadly, and suddenly, populations around the world are learning what it is like to be socially restricted, housebound and isolated from friends and family.
“The feelings of exclusion that many have faced are what thousands of ME sufferers deal with on a daily basis. But for us, this is not temporary, there are no restrictions that can be lifted – with not even a glimpse of a cure on the horizon.
“We are glad to share the stories of people like Chloe and Julie in the hope that we can raise money to fund vital research to unmask this horrific, indiscriminate disease.”
ME Awareness Month – May 2020
The Lost Years
The ME Association
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