Mark Smith, Health Correspondent, Wales Online, 06 August 2019.
While all her school mates are out enjoying their summer holidays, poor Lola Brandrick can only dream of joining them.
The 13-year-old is confined to her bed, constantly exhausted and crippled by widespread pain due to a condition which continues to puzzle many doctors.
Even the smallest of tasks can have a devastating impact on the teenager's energy levels for days, weeks or even months afterwards.
But ever since she was diagnosed with myalgic encephalomyelitis (ME) at the age of seven her family have fought to get her the care and support she desperately needs.
“Having to battle all the time just to be believed has been heartbreaking,” said her mum Victoria Lewis, 45, a fitness instructor and mum-of-two from Swansea.
“I've even had mums not wanting to let their children come and see Lola just in case she's infectious – even though her condition isn't the slightest bit contagious.
“And we've had welfare officers hinting that she should see a psychologist, despite ME being a neurological condition.
“It's been a never-ending fight; all the while Lola has not been given the support she needs. People simply do not understand her condition.”
Lola, described as a bright, bubbly and artistic young woman, first became ill after returning from a family holiday to Cyprus in 2014.
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Victoria said: “She had a high temperature and a virus and gradually got worse. She could not cope with noise, sound or any stimulation.
“She would spend hours asleep with raging temperatures and terrible headaches. Lola was just lifeless for weeks on end, sleeping day after day.”
Her GP referred her to a hospital specialist and a few months later Lola was told she had ME, also known as chronic fatigue syndrome (CFS), most likely as a result of glandular fever.
There are thought to be around 250,000 people suffering with the illness across the UK, with around one in four so badly affected that they are housebound or bedbound.
“Going to school was boom and bust, and made her more sick,” added Victoria.
“The teachers couldn't understand that she would be loud and outgoing one day but be off for weeks the next.
“She once went to a basketball session which only lasted a few hours. After that she was bedbound for the next three weeks.”
In December, Lola joined Olchfa Comprehensive School and is now on a reduced timetable of just three hours a week.
“It is not much but at least she's starting to get a bit better, little by little,” Victoria added.
“Most days she is in bed, but we try to make life as normal as it can be for her. We have to stay strong for her.
“It has taken three years, but we are also going to see an ME specialist in Bristol. It is hopefully light at the end of the tunnel but it has come far too late.
“ME has changed our lives completely and Lola has missed out on so much time in the last few years.
“I can’t believe how it feels to have ME if you have no support or if you can't speak up for yourself.”
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Victoria added that Lola is determined to beat the condition which has robbed her of many of her closest friends.
ME is a neurological condition which causes extreme exhaustion, pain, brain fog, and a variety of other symptoms such as depression.
The ME Association said there was a lack of funding for medical research.
Dr Charles Shepherd, from the charity, said: “ME is the most common medical reason for children being off school long-term yet it is massively misunderstood.
“It is an invisible illness. When you see people with ME, they might not always look ill – and yet it can lead to greater functional impairment than multiple sclerosis or cancer.
“The nature of the illness means patients are hidden away behind closed curtains and desperate not to be forgotten about.
“There is no known cure and no effective treatment. We desperately need more funding towards research and give people a fighting chance of reclaiming their health.”
The Welsh Government said it is trying to improve services for people with ME.
A spokeswoman said: “We understand the challenges faced by people living with this condition and the impact it can have on their lives and their families.
“That is why we are working with healthcare professionals and the third sector to strengthen ME services available across Wales.”
For more information on ME, or to help fund research efforts, visit: www.meassociation.org.uk.
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