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The mum of a young girl has told the heart-breaking story of her daughter's death from a disease some experts refuse to believe exists.
Twenty-one-year-old Merryn Crofts spent the last three years of her life bed-bound as she was suspected to have suffered from myalgic encephalomyelitis (ME). She wasted away to less than six stone before her death last May.
ME, which causes people to be extremely fatigued among other horribly painful conditions, is reported to affect 17 million people around the world but some medical experts are not convinced.
In some circles, the disease is even called 'yuppie flu' because of its energy-sapping impact.
However, Merryn's mum, Clare, is trying to spread the real message by telling her daughter's brave-but-sad story.
"Merryn was passionate about raising awareness and understanding of ME. She wouldn't want other families to suffer like we have," said Clare.
"But she was also ashamed of having ME. Quite often, if asked, she would say she had a neuro-immune disease.
"That's because there is a still a stigma around ME, even in the medical community, and there is a lot of misinformation about ME out there. That has to change."
Clare quit her job as a counsellor to become Merryn's full-time carer after her daughter began to develop symptoms of swelling around her face, hands and feet.
"From being very young she was always a bundle of energy. She was a daredevil, always doing stuff," said Merryn's mum.
"But she would come home from school, crash on the sofa and sleep for six hours. It was like watching a wind-up toy run out of power. And it just kept happening more and more."
After a long period of suffering, various mental health tests and Merryn having to use a wheelchair, it was not until 2012 that her condition was finally recognised.
Clare said: "It was always a battle. ME is recognised by the World Health Organisation as a neurological disease - and has been since the 1960s - there are NICE guidelines on it, but still doctors were telling us they didn't believe in it. It was like banging your head on a brick wall."
In a blog post in 2015, Merryn wrote: "Having severe ME is like being trapped in your own body every single day. There is no rest, you are bed-bound all day every day.
"It snatches the most simple things away from you like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything. Not being able to talk on the phone or have visitors, and feeling worse about saying no every time someone asks again.
"Months and months in hospital. Severe infections. Breathing problems. Low immunity. Problems anywhere and everywhere in the body. Paralysis. Severe hypersensitivity. The list is endless, and if I was physically able to type I would carry on.
"Spread awareness and remember all of us and all of those who have lost their lives."
In 2017's spring, Merryn was then diagnosed with an infection which meant she would no longer be able to use the feeding tubes which she relied on as a result of her condition, which sadly meant that she would lose her fight.
Clare said: "Merryn said she wasn't going back into hospital. She knew what the consequences were. She lasted three months. It was absolutely torture."
On the night she died, Merryn called her mum into her room.
Clare said: "She asked if I could call out the district nurse, then she said to me, 'I've got to be getting off now, Mum.'
"I went downstairs to wait for the nurse. When we went back she was gone.
"Looking back, it was like she was telling me in such a nice way. It's like her last thought was how can I make this easy for my mum."
During her darkest days, shopping-mad Merryn loved to order clothes online, especially Ted Baker outfits, even though she couldn't wear them and after opening them would leave them in their original packaging with the labels still attached.
After her death, her family held a sale, which they dubbed 'Merryn's Pop-up Boutique', which raised £1,200 for the Grenfell Tower appeal.
Merryn's brain and spinal column was also donated to the Ramsay Research Fund - a charity investigating the causes of ME.
In May an inquest into Merryn's death is due to be held. Her family hope it will find she died from ME. If that happens she would become only the second person in the UK to have the illness as their official cause of death, after 32-year-old Sophia Mirza, who died in 2005.
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