From The Mirror, 3 November 2015. Story by Grace Macaskill.
Simple tasks like changing her clothes or just drawing can leave Kaylah Davies totally worn out and she also suffers flu-like symptoms, painful joints, dizziness and nausea.
Like any other little girl, eight-year-old Kaylah Davies would love to go to a birthday party or a sleepover.
But these days she is too ill to join in. even just chatting on the phone to her friends can tire her so much she collapses with exhaustion.
Kaylah is one of Britain’s youngest victims of chronic fatigue syndrome – also known as ME or even myalgic encephalopathy – after being diagnosed at the age of just six.
The most simple of tasks, such as changing her clothes or just drawing, can leave Kaylah totally worn out.
She also suffers flu-like symptoms, painful bones and joints, dizziness and nausea.
Mum Claire, 35, explains: “Sometimes Kaylah can be brushing her teeth or putting on her pyjamas and she will faint or pass out.
“She can only walk short distances, has to be carried upstairs and needs a wheelchair on the five-minute walk to school. She needs almost constant painkillers because her body is sore.
“It’s absolutely devastating.
“She’s an incredible girl and tries not to let it get her down, but you can see it hurts sometimes.
“She’s no longer invited to schoolfriends’ birthday parties because she’s usually too ill to attend and they’ve given up asking her.
“She’s desperate for a sleepover but how can we have anyone to stay when she’s usually too tired even to talk to classmates on the phone?”
Kaylah is one of thousands of children in Britain diagnosed with the little understood condition every year.
Once dismissed as “yuppie flu” – burnout suffered by high-flying executives in the 80s – myalgic encephalopathy is now recognised by the World Health Organisation as a neurological disorder, although nobody knows exactly what triggers it.
Kaylah was as energetic as any other child up to the age of five. After breaking her arm in autumn 2012, she went on to develop viral gastroenteritis.
She never fully recovered, and within weeks she complained to her mum, a former nursery practitioner, that she felt sick and dizzy, and she appeared “wobbly” on her feet.
Worried something was seriously wrong, Claire took Kaylah to the family GP on numerous occasions. But she says the doctor dismissed her concerns, saying that the schoolgirl simply needed to build up her stamina.
But Kaylah’s health continued to deteriorate, and a battery of tests for illnesses such as anaemia and diabetes failed to reveal what was causing her unusual symptoms.
The youngster was also given renal tests for a pre-existing kidney condition, but still medics remainedbaffled.
Her education began to suffer as Kaylah lost the basic skills she had learned as a toddler.
Claire says: “As a toddler she hit all of her milestones. By the time she was three, she knew her phonics and could count to 20.
“But slowly she began to lose those skills. Only now, aged eight, is she starting to regain them and only through hard work and repetition.
“Something was happening to my daughter and nobody seemed to be able to tell us what it was. Everyone seemed ignorant of her symptoms and we were sick with worry.”
The family, of Chippenham, Wiltshire, eventually swapped GP practices, and Kaylah was referred to the Royal Hospital for Rheumatic Diseases in Bath, where she was officially diagnosed with ME in January 2013.
Now she attends school just three hours a day and can’t walk further than 20 metres without her bones hurting.
Any kind of excitement leaves her completely exhausted.
Claire says: “Being so young, Kaylah isn’t really aware of her energy levels, so can tire very easily.
“By the end of the day her limbs are heavy and I have to carry her upstairs to bed and brush her teeth for her.
“She passes out maybe a couple of times a month and someone has to be with her constantly in case she falls.”
The illness has had a huge impact on Claire, husband Karl, 39, and their 12-year-old son Kieran.
Claire says: “It can be utterly exhausting for us all, especially with Kaylah’s sleep problems. I’ve had to give up my job. We’re lucky Kieran is such a lovely boy because Kaylah needs a lot of attention.
“The most frustrating thing about the condition is that some people don’t believe it’s real. Even doctors know very little about it. We’ve had people ask us why Kaylah can’t walk to school if she’s just tired. They don’t understand.”
Mary-Jane Willows – of the Association of Young People with ME which has worked with more than 9,000 children and young people with the illness – says the cause of ME is still unknown, which creates problems getting it diagnosed.
“The lack of understanding is extremely frustrating, but everyone who comes to us for help will eventually end up with the care they need,” she says.
For help visit www.ayme.org.uk or call 0330 22 11 223