It took a death certificate for Merryn Crofts to be vindicated.
For the last six years of her life she had fought to convince people that ME, the illness that had left her bed-bound, was real.
She was 15 when she started feeling weak and breathless and her feet began to swell.
Within six months she was using a wheelchair. Within a year she was housebound. She died in May last year, ten days after her 21st birthday.
Last week, Ms Crofts became only the second person in the UK to have her death recorded as a result of ME after a coroner concluded that it was the much misunderstood illness that was likely to have led to the gastrointestinal failure and other complications that caused her to starve to death.
“It meant the world to me,” her mother, Clare Norton, 49, told The Times. “I know it sounds strange but that kind of official recognition is vindication for Merryn that this was physical. I can’t thank that coroner and all those doctors who gave evidence enough.”
Myalgic encephalomyelitis (ME) affects about a quarter of a million Britons.
The main symptom is extreme fatigue, or “bone-crushing exhaustion” as Mrs Norton puts it.
Other symptoms include muscle pain, hypersensitivity to noise and light, and problems with sleep, memory and concentration.
Tests would later show that at some point she had suffered glandular fever.
She loved musical theatre and wanted to go to drama school, but would come home from school and crash out.
“Her limbs became like lead, as if she was paralysed. Her breathlessness was more like a constant air hunger.”
Mrs Norton remembers going with her daughter to buy new shoes — her swollen feet meant she went up two sizes.
“She was walking like an old lady. Everything became slower and slower. We managed to carry her back to the car and she fell asleep. It was like watching a toy run out of batteries.
“But she didn’t want to give in. She’d say, I can push through it, I can push through it, it’s just mind over matter.” They now believe that the exertion was making her worse.
In the early days of the illness, Ms Crofts’ complaints were dismissed by various doctors as panic attacks and, on one occasion, “hysteria”, according to her mother.
“This seems to happen particularly with teenage girls,” she said. “I know men in their 30s with ME and they don’t seem to get the same response.
“We had doctors saying we just don’t believe in ME. When everyone is saying that to you it’s like a nightmare you can’t get out of.”
Ms Crofts was concerned that her family did not believe her either. “Sometimes she’d say, you don’t think that, do you? She was concerned we thought the same. I said, no darling, we’re going to get to the bottom of this. We’re going to find out what’s wrong. ”
Within two years, she was struggling to swallow. Eventually, she had to be fed through a tube. She was five and a half stone when she died. At the inquest, experts ruled out eating disorders, depression and anxiety.
She had loved fashion — “shopping was her sport” — but once bed-bound couldn’t even bear the touch of certain fabrics on her skin. She found relief in online shopping, buying clothes she couldn’t wear to give to her friends.
“She enjoyed watching me unwrap them for her and choosing who she would give it to,” said Mrs Norton, who gave up her job as a counsellor to care for her daughter full-time.
Towards the end, Ms Crofts couldn’t bear light or even her mother’s touch. “She was such a huggy girl. A Merryn hug was lovely but she couldn’t be hugged. Sometimes, I could stroke her cheek. I developed a way of lying around her, so we could be close.
“She wanted to hug, but she couldn’t. She wanted to eat but she couldn’t. It just stole everything away from her.”
Mrs Norton marked the first anniversary of her daughter’s death this week by becoming a grandmother: her eldest daughter, Amy, gave birth to a son, Flynn. She hopes that Merryn’s case “will bring a sea change in the way people think about ME”.
In 2006 Sophia Mirza, 32, from Brighton, became the first person in the UK to have her death attributed to ME.
Ms Crofts’ brain and spinal cord have been donated for medical research at Addenbrooke’s Hospital, Cambridge. “People with ME have been so badly treated. She wanted to donate her organs so that people didn’t need to suffer like she did,” Mrs Norton said.
A misunderstood illnessMyalgic encephalomyelitis, which affects about a quarter of a million Britons, is recognised by the World Health Organisation as a neurological illness but there is disagreement between health professionals over whether it needs psychological interventions or is mainly physical.
- ME Association Press Release: ‘Inquest Ruling: Young drama student Merryn Crofts killed by M.E.’
- The ME Association and Press Coverage of Merryn Crofts Inquest: ‘Reflective Comments from Dr Charles Shepherd.'
The health watchdog NICE is updating its guidelines for treatment in England amid concern that one of the commonly recommended therapies, involving more exercise, may do more harm than good.
According to the ME Association, one in four sufferers is affected so badly that they are housebound, and in some cases unable to shower or feed themselves.
An ME Association spokesman said: “The difference between ME and just feeling tired is the same as the difference between having a shower and drowning.”