After almost 25 years’ concerted struggle to disseminate her successful eating disorder treatment, Cecilia Bergh wants to shift up a gear. Her goal is to digitalise her technique and turn the Mandometer support tool into a consumer product.
The first patient was a severely anorexic 17-year-old girl who came to Karolinska University Hospital’s emergency department in 1993. The duty doctor transferred her to the psychiatric clinic but staff there deemed her too somatically sick for treatment. The indecisive doctor then remembered that he had heard about a research group at the hospital that worked with eating disorders.
“That’s when the doctor knocked on our door and asked whether I could take care of her. I agreed, and went to the emergency department to meet my first patient,” says Bergh.
Bergh’s research-based model was already in place ready to treat patients. She also had experience with patients, particularly from time working on her PhD, and from volunteer work she had done at clinics in the US. The 17-year-old was admitted for treatment with what today is called the Mandometer Method.
The Mandometer Method is based on more than 20 years’ research. Since 1993, more than 1,400 patients have been given the all-clear following treatment with it. Around 75 per cent of patients are symptom-free, and 90 per cent of these patients remain healthy five years after treatment. Mando is the only company that has been able to record these sort of results, says Bergh.
“Results are important. There is no other treatment unit in Sweden that has had its results published in international journals. We’re also the only company in the world to follow our patients for five years after treatment,” she adds.
But this is not the only way Mando differs from other clinics. While others in the field have experimented with different explanations for eating disorders, Bergh and her colleagues have stubbornly made the same claims.
“Patients simply can’t eat. They don’t know how it feels to be full, what a normal portion looks like, or when you should start or stop eating,” she says.
Their research showed early on that both anorexics and bulimics eat at the same rate throughout a meal. In contrast to those who eat normally, who eat quickly to start with, and eat more slowly towards the end of a meal.
“Later, we discovered that this also applies to patients who are overweight: they also eat at the same pace throughout a meal; we call this linear eating,” explains Bergh.
The treatment is based on teaching patients how to eat correctly. Something that they used to be able to do but have subsequently lost control over.
“The two risk factors for anorexia and bulimia are reduced food intake, what we call dieting, and a high degree of physical activity. When patients lose weight, or increase physical activity, this is perceived as being rewarding. They are also encouraged by their surroundings, and by media as much as by friends and family,” says Bergh.
The path back to a healthy relationship with food is made with the help of a scales that are connected online, and on which people place their plates of food. The tool is called the Mandometer, and it allows patients to compare and adapt the rate at which the eat to typical eating speeds.
“It’s behavioural change that is key to this treatment. Conversations and analyses are less important, indeed they can prolong the condition,” she says.
Over the years, Bergh has seen how the healthcare sector has altered perceptions of anorexia. Explanations for it have ranged from sexual assault and schizophrenia to depression or bipolar conditions.
“Today, it’s seen as an obsessive compulsive disorder – but this is wrong too. You’re compulsive when your eating doesn’t function and you starve. We’ve seen that when you work on eating behaviour, your thinking changes. Cognition is driven by behaviour, not the other way around.”
A conclusion rejected by conventional healthcare experts, she says.
“When eating behaviour is normal, patients also begin to feel better, they become less obsessive and depression eases. There’s a really clear effect on thinking when we change behaviour.”
The frequently excessively exaggerated physical activity of patients disappears.
“If we also add warmth, they refrain from physical activity, and as a bonus the warmth dampens anxiety.”
The journey to today with three clinics in Australia, Sweden, and the US has been arduous. Despite having results published, it took a long time before Mando could obtain a healthcare contract and accept patients on referral.
“The established healthcare sector has little incentive to accept new ideas. There’s a lot of prestige and a lot of money makes its way to existing healthcare methods despite their failure to function especially well.”
This is nothing less than a paradigm shift that is needed for change, she says. But in the healthcare segment, change is extremely slow.
“We’ve now completed 25 years of this long journey, and have paved the way for a new approach to eating disorders. But the breakthrough may not be made in my lifetime; inertia in our healthcare system is an incredibly strong force.
Her own drive has, however, not waned.
“When you’ve developed something that is effective, you have an obligation to ensure that as many patients as possible benefit from it. Furthermore, I come from a family that puts a great deal of importance on what is shown to be true.”
Bergh’s father was a doctor, and her siblings also pursued careers in medicine. Early on, she showed that she had entrepreneurship running through her veins. Her siblings became her first customers when she bought salty sweets for one öre each, and sold them on for two.
“It wasn’t hard to sell out because it was a long way to the shop,” she says.
She learnt the importance of self-reliance early on. After her father died, her family continued to live on a farm on Visingsö, in the southern part of Lake Vättern, where they helped out with the household chores. As an eleven-year-old she probably picked a lot of strawberries, that she sold for 25 öre a litre, to buy an electric sewing machine. A source of inspiration was close by: her mother was a textile artist, and by the age of 27, she employed more than 100 sewers.
“When I turned 15, I had sewed enough clothes to open my own clothes store. And I’d negotiated with the priest to use the parish hall as my office.”
The business survived for several years, and she would produce clothes during the winter so that the store could open during the summer.
“I also sold jugs from Höganäs, silverware, crafts and bigarråer. And I went onto the road to stop traps* to get travellers into my store and shop,” she says and laughs.
The store was a success, and made a small profit every summer that ended up in Bergh’s savings account for studying. Even if her career was taken her in another direction, her interest in fabrics lives on.
“When I’m in New York, I always wander through the Fabric District to look at the never-ending amounts of fabric there. It’s vast and simply breathtaking to see first-hand. And I buy lots of fabric, although I no longer have time to sew.
Having completed a PhD in eating disorders and abnormal behaviours, she was commissioned by the National Board of Health and Welfare to write a book. But she wanted to return to research, and when a position came up at Karolinska Institutet, she jumped at the chance to get back into the lab.
Mando was established at a time when spin-offs from healthcare were keenly encouraged.
“We have, however, always been very careful that it’s the research that drives the clinic, and that the two are closely integrated. Mando has never made a dividend payment, all profit is reinvested into research and clinical development. Something that has been very important to us,” she says.
Around 10 per cent of turnover is ploughed straight back into research and technical development.
“We have nine world patents, but strangely enough, this is unfortunately nothing positive in the healthcare segment. Despite the fact that we should see it as fantastic that knowledge is retained in Sweden, many people think instead that this is just a way of cashing in. This is entirely wrong as we have an obligation to protect Swedish innovations because they have been created with public money. There are well-known examples of others who have instead earned money from inventions and innovations made by naive researchers financed by public sector funding.
The team is currently focused on digitising the treatments, with the aim of ensuring that more people benefit from them.
“This is no mean task, but we’ll succeed – it just needs hard work. And I have highly talented colleagues.”
In addition, it is a stated aim to develop the Mandometer into a consumer product that you can buy at your nearest pharmacy.
“We want to sell 250,000 Mandometers a year! I want to prevent eating disorders and severe obesity, so that we avoid having to treat patients in specialist clinics. Our product will be part of this development,” says Cecilia.
How did it go with your first patient? Didn’t she recover and now works as a lawyer in the EU?
“Every year her father comes to the clinic in Flemingsberg with the biggest box of chocolates he can find – it’s just wonderful.”
*A trap is a horse-drawn carriage, Visingsö’s “local transport” in the 1800s and hundreds of years after that.