Could sticking small metal beads to your ear really help ease the crushing symptoms of chronic fatigue condition ME?
That’s the question being asked this week, after an entrepreneur insisted the devices, known as ear seeds, helped her recover from the illness in just a year.
Critics were stunned earlier this month when Giselle Boxer, 31, from Sheffield, received offers from all six judges on the BBC show Dragons’ Den, for a stake in her business Acu Seeds. The mother-of-one ultimately accepted £50,000 from Dragon Steven Bartlett, also 31, for 12.5 per cent of the business, which sells packets of gold – or silver-plated ear seeds for £30.
ME – which stands for myalgic encephalomyelitis – is a disabling, complex illness that affects 250,000 people in the UK.
Also known as chronic fatigue syndrome, or ME/CFS, symptoms include pain, brain fog, fatigue and an inability to recover after expending even small amounts of energy. While various treatments aim to help patients cope, and some do recover over time, many are unwell for years and there is no cure.
Giselle Boxer, 31, from Sheffield, received offers from all six judges on the BBC show Dragon’s Den, for a stake in her business Acu Seeds
Giselle said ME left her ‘unable to talk for more than five minutes’. But she said a mixture of diet, acupuncture, Chinese herbs and ear seeds led to ‘recovery within 12 months’ and she became pregnant soon afterwards.
The episode prompted a furious backlash from doctors and ME patients, who accused her of selling ‘snake oil’ preying on the ‘most vulnerable and horribly ill people in society’ with no scientific backing to help ME.
Such was the furore that it sparked complaints to both the BBC and the Advertising Standards Authority.
Meanwhile, Giselle stood by her claims. So what is the truth?
Is Giselle just a snake oil salesman? So ear seeds have zero benefit for people with ME?
Advocates – and there are many – claim ear seeds work on the same basis as acupuncture, the Chinese medical practice of inserting hair-fine needles into points around the body. This, it is claimed, can help treat a wide range of illnesses.
However, rather than actually piercing the skin, the beads exert a tiny amount of pressure.
Each seed is roughly 2mm in diameter, attached to a tiny adhesive patch. These are stuck on different points around the ear. The theory is that this opens up invisible energy pathways, or chi, that flow through the ear to the parts of the body that need help healing.
Acu Seeds’ website claims the beads, which stay on the ear for five days, can help with fertility, pain, headaches and digestion depending on where they are placed.
Former prime minister Tony Blair’s wife Cherie was once photographed wearing ear seeds – while supermodel Kate Moss is said to have used them to help her overcome a cocaine addiction.
Former prime minister Tony Blair’s wife Cherie was once photographed wearing ear seeds
Kate Moss is said to have used ear seeds to help her overcome a cocaine addiction
But despite their celebrity following, none of the experts we spoke to were aware of proof they actually do much at all.
Professor David Strain, senior clinical lecturer at the university of Exeter medical school and a medical advisor to the charity Action for ME, says: ‘Treatment for ME is about controlling people’s symptoms.
‘If those ear seeds helped Giselle feel better, then that’s great. But there’s no evidence that anyone else will experience a similar benefit.’
He adds: ‘There is evidence to suggest acupuncture helps with some types of pain. And some patients I’ve worked with have said acupuncture has helped with their fatigue. There’s next to zero evidence ear seeds actually have the same effect as acupuncture.’
But why is everyone so cross? It sounds like Ms Boxer just wants to help.
In a letter of complaint about the Dragons’ Den episode, the ME Association wrote: ‘People who have ME/CFS are often on very low incomes and in the absence of any effective medical treatment are very vulnerable to these sort of unsubstantiated therapeutic claims.’
Dr Edzard Ernst, a researcher who specialises in alternative medicines added: ‘To give severely suffering patients false hope is unethical; to take money from it is despicable, in my view.’
The cause of ME isn’t fully understood, however, some research suggests it can be triggered by viral infections like glandular fever. Experts now think of it as a neurological illness – one that affects the brain and nervous system.
Acu Seeds’ website claims the beads can help with fertility, pain, headaches and digestion depending on where they are placed
Each seed is roughly 2mm in diameter, attached to a tiny adhesive patch and stay on the ear for five days
Despite this, people who have ME are often met with accusations that their symptoms are all in their mind. The ME Association added that patients were ‘fed up with the way in which unproven and expensive treatments are regularly being promoted to them.’
As Professor Strain notes: ‘Many people with ME have been suffering from the disease for 40 or 50 years and haven’t been able to start a family because of it. Someone saying they’ve fixed it with a bit of acupuncture and a change of diet gives strength to people who dismiss people with ME as just being too lazy to get out of bed.’
Even if they help a bit, isn’t it worth trying?
Experts agree there’s little risk of wearing ear seeds.
Professor Strain says: ‘I can’t imagine that they would do any harm on people who’ve got good quality skin but if you’re frail, very elderly or have really bad diabetes and you’ve got something pressing onto the skin for five days then there is a risk that ulcers could form.’
Infectious diseases specialist Dr Alastair Miller, who once ran an ME/CFS service at the Royal Liverpool Hospital, adds: ‘I’m not advocating it in any way and I don’t have any evidence it’s beneficial.’
So if they don’t work, why did Giselle get better?
Dr Miller suggests that any improvement she experienced using ear seeds may have been coincidental. He says a third of patients with ME make a full recovery about six to nine months after their diagnosis, another third will see their symptoms improve and the remaining third will not see their symptoms get much better.
He adds: ‘Ear seeds may well have a placebo effect. If you believe something is going to make you feel better, then you might end up feeling that way.’
Professor Strain says that, if caught very early, ME patients have a better chance of recovery from making simple lifestyle changes such as improving diet and exercise. Meanwhile, most patients wait up to two years to receive a diagnosis – as the symptoms are often not recognised at first by GPs – by which time research suggests recovery takes longer.
What about the other things Giselle said she tried to help her ME. Could any of these have helped her recover?
Experts say it is unclear what may have led to her recovery because she tried a mixture of different things to help.
Professor Strain says: ‘It’s possible that herbs used in traditional Chinese medicines may contain potent anti-virals, which theoretically could help. However, I’m not aware of any robust evidence for this, but I would keep an open mind.
‘We do not yet have a proven treatment for ME – but that’s not to say it’s not out there.’
So what can people with ME do to recover?
Cognitive behavioural therapy, also known as CBT, a type of psychotherapy, can help. The benefit is indirect, helping patients cope better with some of the symptoms. Painkillers like paracetamol or ibuprofen can improve discomfort. Sufferers are also encouraged to monitor their daily activities so they can work out the best way to use the energy they do have.
Some people with ME find that exercising helps with their symptoms, although too much can trigger what is known as post-exertional malaise – where mental or physical strain can make people’s symptoms worse.
Dr Miller says: ‘There’s no doubt the best approach is for people to push themselves a bit, but not too hard. It’s a compromise. What people need to do is exercise a bit but not to extremes.’