Trigger warning: Upsetting content
Article extracts
The BBC's decision to reinstate a Dragons' Den episode with controversial, unfounded medical claims has sparked fresh outrage from the ME community. Clare Norton is disgusted by the decision after tragically losing her daughter Merryn to the disease in 2017.
A grieving mother has blasted BBC Dragons' Den after they allowed an entrepreneur to pitch an ‘ear seed' product that she claimed helped her recover from ME.
Clare Norton is the mother of Merryn Crofts, 21, who became the second person in the UK to have ME (myalgic encephalomyelitis) listed on their death certificate in 2017. The fun-loving drama student spent the last three years of her life bed-bound and weighed just five stone when she died, just days after her birthday.
But last week, the BBC invited businesswoman Giselle Boxer on to Dragons' Den to promote an ‘ear seed' product that she claimed helped her recover from ME. Ms Boxer had previously claimed that ME sufferers are “stuck in a negative mindset” and are “bogged down with their condition.
In 2017, a coroner ruled that ME triggered gastrointestinal failure in Miss Crofts, who effectively starved to death. The landmark inquest concluded that her cause of death was starvation caused by a withdrawal of supportive nutrition, caused by ME.
As Merryn's health deteriorated, Clare fought tirelessly for answers from doctors, paying for a private ME diagnosis before finding a “brilliant” NHS doctor who specialised in the disease. After finally finding someone who took ME seriously, Clare's hopes were dashed, as Merryn's NHS hospital team would “never listen” to the ME specialist because he wasn't in-house or local to their area.
Clare, 55, from Rochdale, Greater Manchester, told the Mirror that her daughter faced failings in her medical care at every turn. When Merryn couldn't breathe properly at the beginning 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, as Clare puts it, insinuated that her daughter's illness was “all in her head”.
Severe ME symptoms
Heartbroken Clare had to watch her daughter fade away as ME stole her bodily functions, all while doctors tried to insist that Merryn's symptoms were psychological – despite the World Health Organisation (WHO) deeming ME a neurological disease. Merryn suffered from breathing problems, brain fog, exhaustion and excruciating hypersensitivity to touch, light and sound, as well as severe gut problems and choking when trying to swallow.
Clare said:
“I felt completely helpless. You're watching someone you love deteriorate and other people don't seem to be able to see that. You're not only being ignored by doctors, you're being disbelieved. For Merryn, that was devastating. When you're so ill and you have to prove this is real. It's like being in a surreal world where nothing makes sense. But she never gave up.”
Although Merryn passed every single mental health assessment throughout her illness – and there were many – doctors kept refusing to rule out a psychological diagnosis and her health deteriorated, her weight plummeting to just five-and-a-half stone.
The youngster, who was once a “lively, outgoing and extroverted” person, could take on just 100 calories a day as her condition worsened and by 2015, her body was rejecting even two teaspoons of nutrients. She was eventually fitted with an intravenous nutrition line but suffered intestinal failure and was given a terminal diagnosis in 2016. Merryn died in May 2017.
BBC Disclaimer
Charities immediately warned after the Dragons' Den episode aired that they have ‘serious' concerns that Ms Boxer's Acu Seeds pitch was showcased as a ‘cure' for ME. Currently, there is no cure for the disease, nor any medical evidence to support ear seeds – a form of needle-free acupuncture – as a viable treatment.
The BBC then pulled the episode from iPlayer last week after the ME Association reported Acu Seeds to watchdog the Advertising Standards Agency. But the broadcaster now claims to have “addressed concerns” with an edited version of the episode.
A new on-screen disclaimer appears in white text, which many argue isn't accessible over the white hue of Ms Boxer's outfit. It reads: “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 the adaptation does not go far enough to protect vulnerable people, desperate for relief, from purchasing a product with no medical backing. They also say that Ms Boxer's claims entrench a ‘baked-in' stigma around the heavily misunderstood and chronically underfunded disease. The broadcaster has been hit with nearly 500 Ofcrom complaints.
Clare says that she was disgusted by the Dragons' Den episode, warning it perpetuates the “damaging” idea that ME isn't a serious illness and can be cured by alternative treatments. She believes Ms Boxer's claims play into the same stigmas that her daughter faced right up until her untimely death, as Merryn's severe ME was never taken seriously by doctors
Slamming the Dragons' Den pitch, which saw all six investors offer up cash without pressing for medical evidence, the mum said:
“My heart sank when I saw it, because I knew it was going to be so harmful for the ME community. It still feels like we're fighting that same old battle. Trying to convince people that this is a serious, debilitating illness that kills. And it's not all in your head. If it was that easy to cure ME, nobody would be suffering from it.”
The final stages of Merryn's life were marred by traumatic hospital admissions and having to “beg” for help from doctors, with some medical professionals even telling Clare that ME “isn't real”. But Merryn remained incredibly strong and selfless throughout.
Clare's heartbreaking battle to advocate for her daughter makes Ms Boxer's ear seed claims a bitterly hard pill to swallow. She's now calling for the BBC to take further action to protect ME sufferers, from non-backed medical claims and the stigma Merryn faced from doctors.
She said:
“The BBC response is so lacking it's laughable. When Merryn was ill, we spent a fortune on anything we read about that we thought could help. So it's preying on people's helplessness and just 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?'