ME isn’t solved by positive thinking ...Dragons’ Den has set back progress on this disease
Watching your daughter fade away is beyond horrifying. Watching her fade away while doctors are unbelieving about what is killing her is unimaginable.
Yet when Merryn Crofts became one of the first to die officially of myalgic encephalomyelitis, ME, she and her family had suffered years of medical scepticism that the condition was real.
The fun-loving drama student spent the last three years of her life bedbound and weighed just 5st when she died 10 days after her 21st birthday.
And now that medics take ME more seriously, Merryn’s mum Clare Norton has blasted the Dragons’ Den after a contestant peddled a dubious “cure”.
Clare, 55, says: “It’s preying on people’s helplessness and adding to that stigma which makes people think, ‘Well, if that’s all that’s needed then ME can’t be that serious, can it?’”
As a young teenager, Merryn, from Rochdale, Gtr Manchester, was a bundle of energy who loved life.
Clare says: “Before she became ill, Merryn was just always out having fun.
“She loved making people laugh. And she was always laughing.”
In August 2011, aged 15, Merryn developed hives and swelling of her face, hands and feet after returning from a family holiday in Mallorca.
In 2012, tests showed she had glandular fever – a known trigger of ME.
Merryn suffered breathing problems, brain fog, exhaustion and hypersensitivity to touch, light and sound.
She also had severe gut problems and choking when trying to swallow.
Reliant on tube feeding, she was unable to take in more than two teaspoons of food before vomiting.
Clare watched her daughter’s health deteriorate while doctors tried to insist her symptoms were psychological.
She says: “I felt completely helpless. You’re not only being ignored by doctors, you’re being disbelieved.
“For Merryn, that was devastating. When you’re so ill and having to prove this is real.
But she never gave up.”
She always had fun and made people laugh
MUM CLARE ON MERRYN BEFORE HER ILLNESS
Clare claims her daughter faced failings in her medical care. When Merryn could not breathe properly at the start of her diagnosis, doctors repeatedly told Clare her daughter was just experiencing panic attacks.
Merryn was also wrongly diagnosed with conditional disorder and dysfunctional disorder, which Clare says insinuated the illness was “all in her head”.
She adds: “A year into her illness, I remember thinking this just isn’t fair.
“She’s being robbed of her life. But she never said that herself.
“She was full of love. And she would show that love to anybody.” Medics also pursued the idea Merryn had an eating disorder as she wanted to eat but could not swallow or keep down any food.
Clare says when her daughter requested a feeding tube, a doctor told her: “You have one, it’s here”, while pointing to his mouth.
Recounting her illness, she adds: “It’s like being stuck in Alice in Wonderland, banging your head against the wall thinking, ‘Can they not see what’s happening, why will nobody listen?’”
Doctors refused to rule out a psychological diagnosis despite Merryn passing assessments, and her health deteriorating further.
She was later fitted with an intrave
There will always be a hole where she should be
nous nutrition line but had intestinal failure and was given a terminal diagnosis in 2016. She died in May 2017.
Merryn lived with her mum, who runs a jewellery firm, and stepdad David Norton, 60, an electrical consultant. She also had a sister, Amy Williams, 30, a teaching assistant.
A landmark inquest concluded Merryn’s cause of death was starvation caused by a withdrawal of supportive nutrition, caused by ME.
She was only the second person in the UK to have ME listed on their death certificate.
Clare said: “The night she died, she called me downstairs and asked me to call her district nurses. And I remember thinking she didn’t look as though she was in as much pain.
“Then she said, ‘I’ve got to get off now’. And I said, ‘Darling, it’s OK. You’re fine, you’re safe, you’re at home, I’m here’. She was quite confused.
“I went into the room to tell Merryn the nurses were here and I thought she’d gone off back to sleep. But she was gone. It turned out she was calling me downstairs to say goodbye.
“Because she didn’t want me to find her in the morning like that. She was always thinking about other people. There will always be a gaping hole where she should be.
“We try to live as we know Merryn would want us to live.”
Last week, the BBC let businesswoman Giselle Boxer promote an “ear seed” on Dragons’ Den, which she claimed helped her recover from ME.
Charities warned after the episode they had concerns that the product was showcased as an ME “cure”.
Currently, there is no cure for the disease nor any evidence to support ear seeds – a needle-free acupuncture – as a viable treatment.
As outrage over the episode grew, the Mirror revealed Ms Boxer was invited on to the show despite having previously claimed ME sufferers are “stuck in a negative mindset”.
The BBC then pulled the episode from iPlayer last week after the ME Association reported Acu Seeds to the Advertising Standards Agency.
But BBC officials now claim to have “addressed concerns” with an edited version of the episode.
Anew on-screen disclaimer says: “Acu Seeds are not intended as a cure for any medical condition and advice should always be sought from a qualified healthcare provider about any health concerns.”
Many in the ME community are furious at the BBC’s move, as they believe it does not go far enough to protect people from buying a product with no medical backing.
Clare said the episode perpetuates the “damaging” idea ME is not a serious illness and can be cured by alternative treatments.
She added: “The BBC response is so lacking it’s laughable. Just putting a disclaimer on the episode is disgraceful because nobody invests £50,000 into something that isn’t going to sell.
“They don’t care whether it’s going to work or not, but they think it’s going to sell. And that’s so wrong.”
Ms Boxer’s shock claim that ME sufferers are “bogged down” by their diagnosis could not be further from the truth for Clare.
She says Merryn lived by three powerful life mantras while ill.
One motto, painted on stones in Merryn’s bedroom, reads: “Life isn’t about waiting for the storm to pass,
MUM CLARE ON DEATH OF DAUGHTER MERRYN
it’s about learning to dance in the rain.”
Responding to Ms Boxer’s claims, Clare said: “You can’t solve ME by positive thinking.
“Merryn was the most positive person I know.
“If people were talking about cancer, heart disease or even mental health in that way, it would be unacceptable.
“This is a serious illness and the programme has reignited all of those negative things people think about ME. It feels like it’s put progress back.”
A BBC spokesman said: “Dragons’ Den is an entertainment programme which features products created by entrepreneurs but is not an endorsement of them. It does not and has never set out to offer medical advice.
“It shows real businesses pitching to investors to lift the lid on what happens in the business world.
“The Dragons’ decision to invest is their own and the BBC has no involvement or commercial interest in any investments.”