21-year-old weighing just six stone dies from a disease that some experts still do not think is real
On May 23rd last year, Merryn Crofts passed away at her home in the UK. She had just turned 21 years old.
The first sign that something was wrong with her appeared more than five years earlier, when she was just 15. She suddenly developed swelling around her face, hands, and feet, prompting doctors to prescribe her antibiotics. But they didn't help. Later on, she became severely exhausted and could barely make it through the school day without falling asleep.
By the time she passed away, she was unable to walk or eat and needed constant care. At 5ft 7in and less than 84 lbs, she was dangerously underweight.
And yet, despite all this, some doctors didn't even believe that Merryn's condition was real.
The 21-year-old had been suffering from myalgic encephalomyelitis, otherwise known as ME or Chronic Fatigue Syndrome. Tragically, not enough was known about the condition to treat the young woman.
"Merryn was passionate about raising awareness and understanding of ME. She wouldn't want other families to suffer like we have," said her mother, Clare. "But she was also ashamed of having ME. Quite often, if asked, she would say she had a neuro-immune disease."
After Merryn's condition worsened, Clare had to quit her job in order to look after her daughter full-time, and she says the change in her was immediately noticeable.
"From being very young she was always a bundle of energy. She was a daredevil, always doing stuff," she explained. "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."
Even though Merryn's symptoms were obvious signs of ME, however, many doctors wouldn't take her seriously.
"One doctor told us if they could discount everything else, then maybe they would diagnose ME," said Clare. "Another just said he didn't believe in it and that was that."
"It was always a battle. ME is recognized 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.
"We kept thinking it can't get any worse than this, but it always did.
'We were constantly weighing up how much energy she had in reserve, how much she could cope with. It got to the point where she had nothing in reserve, she was always borrowing from the next day, always deteriorating.
"Going into hospital was torture for her. Every time she went in she would always come out worse. ME is a constant battle, you never get the chance to recover. There is never any respite, it never ends."
While she still had enough control over her faculties to write a blog, Merryn gave this account of her struggles in 2015:
"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."
Next month, an inquest into Merryn's death will be opened, and her family hopes that it will be concluded that she died as a result of ME. If that happens, it should prompt medical professionals to take the condition more seriously. However, as only one person has ever had the disease recorded as their cause of death in the UK in the past, the chances of that happening are very slim.
Our thoughts are with Merryn's family at this difficult time, and with anyone else who is currently struggling with ME. Hopefully, at some point in the near future, doctors will accept the severity of the disease, and nobody else will have to go through what Merryn did.