From all over the world the tourists come to Sweden… drawn to Stockholm by the easy charm of one of Europe’s most relaxed and beautiful cities.Among the visitors… three Australians.But none of these young women are here for a holiday.As healthy as they look now, when they arrived here each was terribly ill, suffering from a disorder that all too often kills its victims… and destroys their families.
GEMMA BOND Anorexia Patient:I was literally re-fed by a naso-gastric tube, then I joined a psychiatric ward and realistically I think my mental state got worse.
NAYNA PURCHASE Anorexia Patient: I could feel my heart stopping. My ears were ringing. I couldn’t see. My ears were ringing, I couldn’t see. And I went to bed because there was nothing else I could do. And I didn’t know if I would wake up in the morning.
ROSS COULTHART:Gemma, Nayna and Tess have struggled with their eating disorders for years, although that description doesn’t really convey the severity of their illness.Nayna and Gemma have anorexia nervosa… a few months back they were starving to death. Tess has bulimia, which compelled her to binge uncontrollably on food and then make herself sick.Their parents realised conventional treatment, just wasn’t working. So they flew their daughters 16,000 kilometres to find help. In a desperate bid to save their daughters’ lives, they brought them to this Stockholm clinic which – in defiance of conventional medicine - offers what may well be the World’s first ever cure for eating disorders.
DR MICHAEL CARR-GREGG, PSYCHOLOGIST: This is on a par with the invention of penicillin, the treatment of scurvy and the treatment for infections with antibiotics. I'd put it right up there.
GERALD PURCHASE, Naya’s Father: If science proves it to be true it is an enormous - it's a momentous discovery. It turns things absolutely upside down.
ROSS COULTHART:This is the Karolinska Institute, the internationally renowned medical research centre that awards the annual Nobel prizes for physiology and medicineIt’s here that eleven years ago that Professor Per Soderston and Dr Cecilia Bergh, began to develop their eating disorder treatment. It’s based around a revolutionary theory that this disease is not caused by a psychiatric illness at all.They argue it’s often just a consequence of too little food and too much exercise. Their studies show that even a simple diet can develop into an eating disorder. The denial of proper nourishment means the body can respond in alarming ways trapping a sufferer with the classic psychiatric symptoms we see in anorexics and bulimics
Sufferers quite literally forget how to eat properly.
PROFESSOR PER SODERSTEN, KAROLINSKA INSTITUTE, SWEDEN:It is intuitively difficult for many people to understand that something as natural as eating can go wrong but it can. And there are very many examples of what can happen in the brain when eating goes wrong.
ROSS COULTHART: Per Sodersten and Cecilia Bergh have ditched the anti-depressant drugs commonly prescribed in other treatments, using a combination of therapies to teach patients how to eat all over again. And in most of their patients, the psychological problems the girls have then usually begin to disappear.
NAYNA PURCHASE:Q: Do you think that what they’re doing here is potentially a cure for eating disorders?A: Yes. There may not be an instant cure. But it is a cure…Here, as well as getting me to the level where I can survive, they’re teaching me how to eat, when to feel full, when to stop eating. How to manage when I’m out of here.
DR CECILIA BERGH, KAROLINSKA INSTITUTE:We encourage the patients to take risks and when they succeed and take the challenge and dare to take these risks,, then their self-esteem will increase.(06:29 shot of Swedish patient has not cleared permission to use her face in this shot. Restricted only in Sweden. No restriction in Rest of World).
ROSS COULTHART:Trapped in the obsessions of her illness this young patient has to be encouraged to accept that there’s not more in this glass than she’s already agreed to drink.
ROSS COULTHART TO CAMERA:The tension here lies just below the surface. Never more so than at mealtimes. Under the watchful eye of their case managers these patients are measuring out their meals to the nearest tenth of a gram.They don’t want to have to eat any more than they’ve agreed to. It underlines how something so natural for most of us is, for these young women, utterly confronting.
ROSS COULTHART: Gemma is still very early in her treatment and every meal is an ordeal.Patients here are taught how to eat again using a computer known as a mandometer.This tracks the rate that they consume food against that of healthy normal eaters.. It helps them avoid eating either too slowly or quickly.
DR CECILIA BERGH, KAROLINSKA INSTITUTE: They don’t know what a normal portion is. How much should they eat? What should they eat? How should they feel satiated?
ROSS COULTHART: Gemma eats using the mandometer under the close supervision of her case manager, Rebecca
GEMMA BOND:It’s so useful. It’s my safety zone now really.Q: Why?A: Because I know it won’t lie, as such.ROSS COULTHART:In the eating room next door, the stress of mealtime is too much for one girl…But Gemma has learned just to ignore it.(screaming)
DR CECILIA BERGH, KAROLINSKA INSTITUTE: For about three months, they eat with their case manager and they keep on training and training. It’s very much like if you break a leg and you need a crutch and you have a cast. You keep on training and training with the cast and the crutch and then eventually you lose the crutch and you don’t need it any longer and that’s the same with the same with the mandometer. You don’t need it for maybe 3 – 4 months and then your eating behaviour has normalised.
ROSS COULTHART:After every meal patients must rest in these warming rooms for an hour. Experience has shown the heat dramatically helps calm the anxiety patients feel about eating. It’s also part of their re-socialisation to teach them the skills many have forgotten.
ROSS COULTHART:There’s a long waiting list for this clinic which can only take 100 patients including children at any one time.Most are Swedish nationals, treated here at Government expense, but they also accept paying patients from all over the World.The Government has made Karolinska the emergency centre for all of Stockholm’s eating disorder patients.And more than 200 people have come out of here in remission.
GEMMA BOND:Very slowly I’m feeling more normal. The fear is generated by yourself here not by somebody else making you feel threatened.
Q: There does seem to be a lot of love here?
A: Oh yeah.
Q: How much does that make a difference for you?
A: So much. I think that’s what plays a key part in the recovery here. I can now go outside and not feel that I’m abnormal in that sense. Physically maybe a little bit abnormal but inside I can be a normal person, I can join in normal conversations, I can go out in the general public and not wear a big sign saying ‘I’m from a mental health hospital’.
ROSS COULTHART:After a rigorous seven year scientific trial Sodersten and Bergh are claiming hitherto un-heard-of results. On the other hand the evidence for the effectiveness of conventional treatment is poor. A high proportion of anorexics die and less than half have a ‘good outcome’ with conventional care. The Karolinska results are a major break-through.
DR CECILIA BERGH, KAROLINSKA INSTITUTE:Seventy-five per cent of these patients would go in remission within about a year and about 90 per cent of those going in remission will stay healthy. We follow all patients for five years after remission.
ROSS COULTHART:Now these are extraordinary claims, but the experience of these four Australian families, does seem to back it up.Fifteen year old Gemma’s only been here in Sweden for eight weeks so it’s still very early days yet. But it’s clear already to her mother Caroline that bringing Gemma to the other side of the World may have saved her daughter’s life.
CAROLINE BOND Gemma’s Mother: Believe me. Looking back on it, my daughter’s been ill, probably for three years. And she came close to death at least twice. There’s nothing indulgent about any of this.I believe that if I took her home tomorrow, she would go back – and she’s said this to me herself – she would go back down the same track and perhaps die.
ROSS COULTHART:Hard to believe now, but when 15-year-old Nayna Purchase came to Stockholm four months ago she was the weight of a child half her age.
GERALD PURCHASE:The worst moment was the very first evening at the Royal Children’s Hospital. What was gut-wrenching was this little child sitting next to me saying ‘I’ll do anything, Please don’t leave me here’. It’s hard, just having this little soul just crying and saying, ‘I’ll go downstairs to McDonalds I’ll eat anything. But don’t leave me here’ It kept her alive medically and for that I’m grateful but that’s the limit to what it did.
ROSS COULTHART:During the last five years she’s had lengthy stays in numerous hospitals, often admitted as an emergency patient because her weight was so dangerously low.
NAYNA PURCHASE:I know that they wasted my time, my parents’ time my parents’ money, doing something that they assured us would help me. So in a way I’m angry but at the same time I’d be dead if it weren’t for them.
GERALD PURCHASE:I’m grateful that she’s alive, was kept alive. The treatments were not doing anything.Q: How close to death did she get?A: Very.There were one or two incidents where we thought that she was going to die. One particular time she simply refused to eat or drink and I remember having the conversation with her saying to her ‘for how long can you survive without drinking?’, and she said to me ‘Maybe five or six days’. And I said. ‘Yep. That means you will be dead next weekend.’ And she just kept quiet.
ROSS COULTHART:Nayna’s father, Gerald Purchase, is a psychologist. From the medical literature he understood that eating disorders are supposedly a psychiatric or mental illness and that the way to treat them is to look for an underlying cause. It’s a notion developed last century by a pioneer of modern psychoanalysis Sigmund Freud.
GERALD PURCHASE:If you had come to me with your child who had an eating disorder five years ago, I would have treated you in essentially a Freudian manner because I would have looked for the underlying cause and I would not have helped you at all.
ROSS COULTHART: Nayna’s doctors went looking for what they thought would be the cause of her eating disorder. That meant often probing and confronting questions for her family.
GERALD PURCHASE:Essentially somebody was always blamed. It was usually my wife. Blame is perhaps too strong a word. But the reason that triggered it was often given as my wife’s illness.
Q: She was suffering from a brain tumour?
A: My wife had had a brain tumour. But there were plenty of other reasons. My wife was too exotic. We were too strict. We were too undisciplined.
ROSS COULTHART:At Karolinska they believe such psychiatric probing can makes eating disorders worse.
DR CECILIA BERGH:The more you ask the patients about why they became anorexic and what was the family situation at that time and keep asking and questioning the patient and the parents about it, the more you maintain the illness. So we don’t do that.
DR JOHN COURT, PHYSICIAN, ADOLESCENT MEDICINE: Over and over again I see where parents and families are deeply depressed and distressed by their young person’s illness and of course a part of that is – what did we do wrong?. It must have been our fault – every parent asks themselves… and that’s not true and it’s not appropriate to explore it.
ROSS COULTHART:Doctor John Court is a senior Australian physician specialising in adolescent medicine. He is so impressed by the Swedish results, he now acknowledges that decades of psychiatric treatment of eating disorders – while well-meaning – may indeed be useless.
DR JOHN COURT:Q: Is there any evidence that any of the conventional treatments for eating disorders have any effect at all?
A: The short answer to that is no. I have to say that I have become increasingly disillusioned by the role of formal what one might regard as conventional psychiatric treatment
Q: Why?
A: Because they don’t seem to work in the way in which we’d regard conventional treatment or any other disease to work. They don’t seem to help.
ROSS COULTHART:But what evidence is there that conventional treatments for eating disorders have any effect at all?
PROFESSOR JANICE RUSSELL – Psychiatrist:There’ve been a number of long-term outcome studies but these are done 40 years or so ago, so it’s not really similar to the treatment people would have now.
Q: Isn’t it possible 100 years of psychiatry treating Eating Disorders as a psychiatric illness is wrong?
A: PAUSE Well I suppose it’s possible.
ROSS COULTHART:It is vital scientists resolve the argument about Karolinska’s effectiveness because eating disorders around the world are on the rise for both sexes.Our culture is more body-obsessed than ever before.Up to three in every hundred women has anorexia or bulimia. Up to 20 per cent of anorexics will eventually die because of complications caused by their disease.But the current treatment to fight this epidemic is clearly failing.There is no scientific proof that it is actually a mental illness which causes young women like these to develop eating disorders. And there’s no explanation for why women particularly seem more susceptible to the disease.Per So Sodersten and Cecilia Bergh believe that the often bizarre psychiatric symptoms of anorexia and bulimia are in fact caused by the starvation and that they’re not the cause of the disorder in the first place.
DR CECILIA BERGH:We say that the psychiatric symptoms that all patients have – such as anxiety, depression and obsessional acts and thoughts – are consequences to the distorted eating behaviour, to the starvation or to the binge eating.
ROSS COULTHART:Per Sodersten and Cecilia Bergh’s theory has its origins in research done soon after World War Two. The allies knew little about how to help starving refugees. So the US military asked a noted scientist – Dr Ancel Keys – to study the effects of human starvation on the human body.In that research, which began at the University of Minnesota 60 years ago, 36 young, fit, healthy and sane young men agreed to starve themselves for six months.They halved their calorie intake. All soon started to develop obsessions with food, doing excessive physical exercise, and binge eating.
DR CECILIA BERGH:They displayed all the symptoms that you see with our patients – with our Anorexia and Bulimia Nervosa patients.
ROSS COULTHART:Per Sodersten and Cecilia Bergh believe that Minnesota is the crucial element to understanding eating disorders… and the best way to treat them. It proved that fit, sane, people could develop eating disorders, with all those psychiatric symptoms, just by starving themselves.
PROFESSOR PER SODERSTEN, KAROLINSKA INSTITUTE, SWEDEN:There are two risk factors for anorexia and eating disorders in general. And that is too little to eat and too much physical activity and then all sorts of things emerge as the phenomenon develops. And we say that all the symptoms you see in an eating disorder patient have emerged from these two risk factors.
ROSS COULTHART:Anorexics have a compulsion to exercise… anything to burn off the calories they may have consumed.Going on long runs while dieting and studying hard at school are the reasons why Gemma slid into her illness.She always refused to believe the psychiatrists in Australia who treated her, and told her that her illness was a result of her mother’s strong character.
GEMMA BOND:I knew Mum had nothing to do with it. But when it’s being drilled into your head every day in hospital you can’t help but believe some of it.
Q: What do you know now?
A; None of it is correct in that respect. I think my Mum was in tears more than I was at some stages in Australia because she felt so guilty or at least the hospital made her feel so guilty.
Q: Has it helped your relationship coming here?
A: Oh 100 per cent. 100 per cent. I’m now just my Mum’s daughter again. I’m not her patient as such. She had to look after me because what she had been told she did.
ROSS COULTHART:Gemma Bond’s mother Caroline is a surgeon, used to treating patients of her own.But nothing prepared her for having to help her own daughter fight anorexia and the impact it had on her family..
CAROLINE BOND Gemma’s Mother:It feels as if the whole family has anorexia. We’ve just been smashed to bits. Someone else used the word disembowelling of the family and I would agree with that completely. We’re all asking ourselves did we do something. We’re all wanting to do something. We all feel totally powerless.
ROSS COULTHART:It’s a gradual treatment – taking just over a year to put at least three-quarters of patients into remission. But Gemma Bond has no doubt even after a couple of months that it’s working.
GEMMA BOND:Q: That’s changing the way you feel about eating food?A: I feel safe with the meals I have here. Never did I feel safe in Australia.
ROSS COULTHART: Per Sodersten and Cecilia Bergh want their research to be trialled elsewhere in the World to confirm it really is the breakthrough they believe it is. Their success in treating hundreds of young Swedish women so far, is powerful evidence they may well be right. Women like Helen Prim. Helen’s struggle with anorexia began when she was 16. Like so many of those with the disease, she couldn’t rid herself of the awful obsessions that made her want to starve herself.
HELEN PRIM:It got really serious. I couldn’t think of anything other than food and getting thinner and everything else in my life was put aside
ROSS COULTHART:Four years ago Helen started treatment at the Karolinska Institute clinic and, barring any relapse, by at the end of next year she will be deemed ‘cured’.
HELEN PRIM:Q: So you’re not technically a cure yet?
A: No
Q: Do you feel cured?
A: I feel cured. Sometimes I can think that life would be better if I was thinner or if something else is bad I can think OK if I don’t eat everything will be better. But every time I think that something else in my head tells me ‘this is stupid, you’ve tried it and it doesn’t work.’
ROSS COULTHART:Few conventional treatments for eating disorders monitor their patients for any more than a year after treatment. About 40% of those patients relapse.What makes Karolinska’s treatment results extraordinary is that not only do three-quarters of its patients get better in a year, 90% of them like Helen, are still well five years later.
HELEN PRIM:Now it feels really good. I have a life and I don’t have to control with food.
Q: You’re getting married?
A: Yeah I’m getting married next year
Q: Did that ever seem possible to you three or four years ago?A; No I didn’t think that way I was focused on food and food and getting thin.
Q: Were you ever frightened of dying from your eating disorder?
A: Well dying sometimes seemed like a way out because when you’re in that thing you can’t see a way for your fully recovered or a way out. So yeah.
Q: It makes where you are now all the more miraculous doesn’t it?
A: Yeah.
ROSS COULTHART:Helen Prim sees herself as living proof that the Karolinska treatment’s focus on eating behaviour is the key to beating this disease.
HELEN PRIM:They didn’t treat you like a sick person, like a very ill person. They just focus on the eating not the psych – the problems in your head. Because I think when you eat right, the problems in your head slowly disappears.
ROSS COULTHART:Because those psychiatric symptoms diminish as patients re-learn how to eat again is what suggests to Cecilia Bergh that eating disorders are not a mental illness at all.
DR CECILIA BERGH:We are measuring carefully psychiatric symptoms every six weeks during treatment and we see that the obsessional compulsive symptoms as well as depression and anxiety decreases when ah the eating behaviour normalises and as an effect of that the BMI or the weight goes up.Q: So as they learn how to eat again, the psychiatric illness goes away?A: Correct.
ROSS COULTHART:Eleven weeks into her stay, Tess, a Bulimia sufferer, is slowly getting better.
MARIE STANWAY Tess’s Mother:The psychiatric symptoms of anxiety and you know obsessions relating to behaviour and depression. I see them going. I see my daughter coming back as the person that she was.
ROSS COULTHART:Tess’ mother Marie is getting ready to head home, but Tess will stay in Sweden. Her father John and brother Jack have flown in to take over the support role.
MARIE STANWAY:I’m looking forward to going back home, getting on with my life. Looking forward to the family being together and just being normal.
Q: Did you ever think you’d get there?
A: … I always hoped I would. I never gave up hope. That was I needed to have the hope to keep going.What I’d love to see is this opportunity that I think we’re very fortunate to have had is available to people who want it.
ROSS COULTHART:Michael Carr-Gregg is another of Australia’s top psychologists specialising in adolescent health.At his own expense He travelled to Sweden last year to see the Karolinska treatment for himself, after a former patient he was unable to help with conventional treatment got better there.But He tried and failed in his efforts to get a report of her dramatic improvement even reported accepted by the prestigious Medical Journal.
DR MICHAEL CARR-GREGG - Psychologist:It is shameful that psychiatry and particularly those elements of psychiatry dealing with eating disorders have rejected this notion out of hand.
Q: There are people in the psychiatric profession who claim that conventional treatment is working?
A: So put your treatment up against the Karolinska Institute model in a trial, that’s all I ask.
DR CECILIA BERGH:We would very much like to perform such a study. We have initiated discussions for years but the psychiatric community has so far said they do not want to participate.
Q: Do you find their explanations for why they do not want to do a comparison convincing.
A: No. The psychiatric community could very well be right. It could be a psychiatric illness, but no-one has shown that the psychiatric illness causes anorexia nervosa and as long as no-one has shown that anorexia nervosa is a psychiatric illness, I think we should use the results we have today.
ROSS COULTHART:Cecilia Bergh and Per Sodersten are enthusiastic about the prospect of a trial of the treatment they have developed here in Sweden. They hope it will be trialled elsewhere in the World. And already they’ve opened new clinics in San Diego and Amsterdam.They see it as vital that the results they’ve achieved are replicated in other trials so that the Karolinska treatment can become an accepted therapy in mainstream medical institutions..
PROFESSOR PER SODERSTEN:I think the first evidence we have produced here so far is that the treatment is effective. I think the most important step is to compare this treatment with other types of treatment.
Q: So you’d like to see a replication of your results in Australia?
A: Of course, and all over the world. As soon as someone has a good result in whatever field of endeavour it needs to be replicated and this is no exception.
ROSS COULTHART:Today’s weigh day for Gemma.Gemma accepts she has to put on weight to get better but as she’s still in the grips of the disease, knowing she’s putting on weight is unbearable..To stop patients dwelling on it, they aren’t told how much they weigh.Gemma’s gained the right amount.
CAROLINE BOND:Gemma’s strength to combat this disease that’s what I see is improving, at the moment they are giving her that control, that facility to say this is what I can do to push the disease out of the way.
ROSS COULTHART:Nayna is well enough now to live in the apartments next to the hospital.Next week it’s back home where she’ll be monitored by Karolinska another four years.
GERALD PURCHASE:The child that I thouoght had gone forever has come back. The first sign that we saw that something was starting to change was a little twinkle in the eye. Nothing physical, in fact her weight went down slightly, but just a little twinkle in her eye and just a little naughtiness and the ability to play and be a little bit silly. That was the first sign that something was ok
ROSS COULTHART:Today is her farewell session
NAYNA PURCHASE:Something has just clicked inside of me. I can’t explain it, it’s just something inside.
DR CECILIA BERGH:You feel very good and you are so happy for her and for her parents and her friends that she will now go back to school and start to face a life of being healthy.
ROSS COULTHART:But for these young women, it will take years before any of them can feel confident they’re cured of their eating disorders.
GEMMA BOND:I’ve made so many friends who’ve been in the similar situation as me and I’d really like them to have the same opportunity as I have been given.
Q: Because you think this place works don’t you?
A: Yes I do. And I’m only half way through treatment but I’m certain this place works.
ROSS COULTHART:The reason they want their story told is because they believe there may finally be a solution to a disease that destroys so many young lives.
DR CECILIA BERGH:You get rewarded every day when you see the patients become healthy and also that the families are complete again, especially the mothers often who blames herself for doing something wrong, or had done something wrong and there is nothing wrong with the parents.
Q: Are you confident that Nayna, Gemma and Tess will all stay well?
A: Oh yes. I’m sure they will stay healthy for the rest of their lives.
END
GEMMA BOND Anorexia Patient:I was literally re-fed by a naso-gastric tube, then I joined a psychiatric ward and realistically I think my mental state got worse.
NAYNA PURCHASE Anorexia Patient: I could feel my heart stopping. My ears were ringing. I couldn’t see. My ears were ringing, I couldn’t see. And I went to bed because there was nothing else I could do. And I didn’t know if I would wake up in the morning.
ROSS COULTHART:Gemma, Nayna and Tess have struggled with their eating disorders for years, although that description doesn’t really convey the severity of their illness.Nayna and Gemma have anorexia nervosa… a few months back they were starving to death. Tess has bulimia, which compelled her to binge uncontrollably on food and then make herself sick.Their parents realised conventional treatment, just wasn’t working. So they flew their daughters 16,000 kilometres to find help. In a desperate bid to save their daughters’ lives, they brought them to this Stockholm clinic which – in defiance of conventional medicine - offers what may well be the World’s first ever cure for eating disorders.
DR MICHAEL CARR-GREGG, PSYCHOLOGIST: This is on a par with the invention of penicillin, the treatment of scurvy and the treatment for infections with antibiotics. I'd put it right up there.
GERALD PURCHASE, Naya’s Father: If science proves it to be true it is an enormous - it's a momentous discovery. It turns things absolutely upside down.
ROSS COULTHART:This is the Karolinska Institute, the internationally renowned medical research centre that awards the annual Nobel prizes for physiology and medicineIt’s here that eleven years ago that Professor Per Soderston and Dr Cecilia Bergh, began to develop their eating disorder treatment. It’s based around a revolutionary theory that this disease is not caused by a psychiatric illness at all.They argue it’s often just a consequence of too little food and too much exercise. Their studies show that even a simple diet can develop into an eating disorder. The denial of proper nourishment means the body can respond in alarming ways trapping a sufferer with the classic psychiatric symptoms we see in anorexics and bulimics
Sufferers quite literally forget how to eat properly.
PROFESSOR PER SODERSTEN, KAROLINSKA INSTITUTE, SWEDEN:It is intuitively difficult for many people to understand that something as natural as eating can go wrong but it can. And there are very many examples of what can happen in the brain when eating goes wrong.
ROSS COULTHART: Per Sodersten and Cecilia Bergh have ditched the anti-depressant drugs commonly prescribed in other treatments, using a combination of therapies to teach patients how to eat all over again. And in most of their patients, the psychological problems the girls have then usually begin to disappear.
NAYNA PURCHASE:Q: Do you think that what they’re doing here is potentially a cure for eating disorders?A: Yes. There may not be an instant cure. But it is a cure…Here, as well as getting me to the level where I can survive, they’re teaching me how to eat, when to feel full, when to stop eating. How to manage when I’m out of here.
DR CECILIA BERGH, KAROLINSKA INSTITUTE:We encourage the patients to take risks and when they succeed and take the challenge and dare to take these risks,, then their self-esteem will increase.(06:29 shot of Swedish patient has not cleared permission to use her face in this shot. Restricted only in Sweden. No restriction in Rest of World).
ROSS COULTHART:Trapped in the obsessions of her illness this young patient has to be encouraged to accept that there’s not more in this glass than she’s already agreed to drink.
ROSS COULTHART TO CAMERA:The tension here lies just below the surface. Never more so than at mealtimes. Under the watchful eye of their case managers these patients are measuring out their meals to the nearest tenth of a gram.They don’t want to have to eat any more than they’ve agreed to. It underlines how something so natural for most of us is, for these young women, utterly confronting.
ROSS COULTHART: Gemma is still very early in her treatment and every meal is an ordeal.Patients here are taught how to eat again using a computer known as a mandometer.This tracks the rate that they consume food against that of healthy normal eaters.. It helps them avoid eating either too slowly or quickly.
DR CECILIA BERGH, KAROLINSKA INSTITUTE: They don’t know what a normal portion is. How much should they eat? What should they eat? How should they feel satiated?
ROSS COULTHART: Gemma eats using the mandometer under the close supervision of her case manager, Rebecca
GEMMA BOND:It’s so useful. It’s my safety zone now really.Q: Why?A: Because I know it won’t lie, as such.ROSS COULTHART:In the eating room next door, the stress of mealtime is too much for one girl…But Gemma has learned just to ignore it.(screaming)
DR CECILIA BERGH, KAROLINSKA INSTITUTE: For about three months, they eat with their case manager and they keep on training and training. It’s very much like if you break a leg and you need a crutch and you have a cast. You keep on training and training with the cast and the crutch and then eventually you lose the crutch and you don’t need it any longer and that’s the same with the same with the mandometer. You don’t need it for maybe 3 – 4 months and then your eating behaviour has normalised.
ROSS COULTHART:After every meal patients must rest in these warming rooms for an hour. Experience has shown the heat dramatically helps calm the anxiety patients feel about eating. It’s also part of their re-socialisation to teach them the skills many have forgotten.
ROSS COULTHART:There’s a long waiting list for this clinic which can only take 100 patients including children at any one time.Most are Swedish nationals, treated here at Government expense, but they also accept paying patients from all over the World.The Government has made Karolinska the emergency centre for all of Stockholm’s eating disorder patients.And more than 200 people have come out of here in remission.
GEMMA BOND:Very slowly I’m feeling more normal. The fear is generated by yourself here not by somebody else making you feel threatened.
Q: There does seem to be a lot of love here?
A: Oh yeah.
Q: How much does that make a difference for you?
A: So much. I think that’s what plays a key part in the recovery here. I can now go outside and not feel that I’m abnormal in that sense. Physically maybe a little bit abnormal but inside I can be a normal person, I can join in normal conversations, I can go out in the general public and not wear a big sign saying ‘I’m from a mental health hospital’.
ROSS COULTHART:After a rigorous seven year scientific trial Sodersten and Bergh are claiming hitherto un-heard-of results. On the other hand the evidence for the effectiveness of conventional treatment is poor. A high proportion of anorexics die and less than half have a ‘good outcome’ with conventional care. The Karolinska results are a major break-through.
DR CECILIA BERGH, KAROLINSKA INSTITUTE:Seventy-five per cent of these patients would go in remission within about a year and about 90 per cent of those going in remission will stay healthy. We follow all patients for five years after remission.
ROSS COULTHART:Now these are extraordinary claims, but the experience of these four Australian families, does seem to back it up.Fifteen year old Gemma’s only been here in Sweden for eight weeks so it’s still very early days yet. But it’s clear already to her mother Caroline that bringing Gemma to the other side of the World may have saved her daughter’s life.
CAROLINE BOND Gemma’s Mother: Believe me. Looking back on it, my daughter’s been ill, probably for three years. And she came close to death at least twice. There’s nothing indulgent about any of this.I believe that if I took her home tomorrow, she would go back – and she’s said this to me herself – she would go back down the same track and perhaps die.
ROSS COULTHART:Hard to believe now, but when 15-year-old Nayna Purchase came to Stockholm four months ago she was the weight of a child half her age.
GERALD PURCHASE:The worst moment was the very first evening at the Royal Children’s Hospital. What was gut-wrenching was this little child sitting next to me saying ‘I’ll do anything, Please don’t leave me here’. It’s hard, just having this little soul just crying and saying, ‘I’ll go downstairs to McDonalds I’ll eat anything. But don’t leave me here’ It kept her alive medically and for that I’m grateful but that’s the limit to what it did.
ROSS COULTHART:During the last five years she’s had lengthy stays in numerous hospitals, often admitted as an emergency patient because her weight was so dangerously low.
NAYNA PURCHASE:I know that they wasted my time, my parents’ time my parents’ money, doing something that they assured us would help me. So in a way I’m angry but at the same time I’d be dead if it weren’t for them.
GERALD PURCHASE:I’m grateful that she’s alive, was kept alive. The treatments were not doing anything.Q: How close to death did she get?A: Very.There were one or two incidents where we thought that she was going to die. One particular time she simply refused to eat or drink and I remember having the conversation with her saying to her ‘for how long can you survive without drinking?’, and she said to me ‘Maybe five or six days’. And I said. ‘Yep. That means you will be dead next weekend.’ And she just kept quiet.
ROSS COULTHART:Nayna’s father, Gerald Purchase, is a psychologist. From the medical literature he understood that eating disorders are supposedly a psychiatric or mental illness and that the way to treat them is to look for an underlying cause. It’s a notion developed last century by a pioneer of modern psychoanalysis Sigmund Freud.
GERALD PURCHASE:If you had come to me with your child who had an eating disorder five years ago, I would have treated you in essentially a Freudian manner because I would have looked for the underlying cause and I would not have helped you at all.
ROSS COULTHART: Nayna’s doctors went looking for what they thought would be the cause of her eating disorder. That meant often probing and confronting questions for her family.
GERALD PURCHASE:Essentially somebody was always blamed. It was usually my wife. Blame is perhaps too strong a word. But the reason that triggered it was often given as my wife’s illness.
Q: She was suffering from a brain tumour?
A: My wife had had a brain tumour. But there were plenty of other reasons. My wife was too exotic. We were too strict. We were too undisciplined.
ROSS COULTHART:At Karolinska they believe such psychiatric probing can makes eating disorders worse.
DR CECILIA BERGH:The more you ask the patients about why they became anorexic and what was the family situation at that time and keep asking and questioning the patient and the parents about it, the more you maintain the illness. So we don’t do that.
DR JOHN COURT, PHYSICIAN, ADOLESCENT MEDICINE: Over and over again I see where parents and families are deeply depressed and distressed by their young person’s illness and of course a part of that is – what did we do wrong?. It must have been our fault – every parent asks themselves… and that’s not true and it’s not appropriate to explore it.
ROSS COULTHART:Doctor John Court is a senior Australian physician specialising in adolescent medicine. He is so impressed by the Swedish results, he now acknowledges that decades of psychiatric treatment of eating disorders – while well-meaning – may indeed be useless.
DR JOHN COURT:Q: Is there any evidence that any of the conventional treatments for eating disorders have any effect at all?
A: The short answer to that is no. I have to say that I have become increasingly disillusioned by the role of formal what one might regard as conventional psychiatric treatment
Q: Why?
A: Because they don’t seem to work in the way in which we’d regard conventional treatment or any other disease to work. They don’t seem to help.
ROSS COULTHART:But what evidence is there that conventional treatments for eating disorders have any effect at all?
PROFESSOR JANICE RUSSELL – Psychiatrist:There’ve been a number of long-term outcome studies but these are done 40 years or so ago, so it’s not really similar to the treatment people would have now.
Q: Isn’t it possible 100 years of psychiatry treating Eating Disorders as a psychiatric illness is wrong?
A: PAUSE Well I suppose it’s possible.
ROSS COULTHART:It is vital scientists resolve the argument about Karolinska’s effectiveness because eating disorders around the world are on the rise for both sexes.Our culture is more body-obsessed than ever before.Up to three in every hundred women has anorexia or bulimia. Up to 20 per cent of anorexics will eventually die because of complications caused by their disease.But the current treatment to fight this epidemic is clearly failing.There is no scientific proof that it is actually a mental illness which causes young women like these to develop eating disorders. And there’s no explanation for why women particularly seem more susceptible to the disease.Per So Sodersten and Cecilia Bergh believe that the often bizarre psychiatric symptoms of anorexia and bulimia are in fact caused by the starvation and that they’re not the cause of the disorder in the first place.
DR CECILIA BERGH:We say that the psychiatric symptoms that all patients have – such as anxiety, depression and obsessional acts and thoughts – are consequences to the distorted eating behaviour, to the starvation or to the binge eating.
ROSS COULTHART:Per Sodersten and Cecilia Bergh’s theory has its origins in research done soon after World War Two. The allies knew little about how to help starving refugees. So the US military asked a noted scientist – Dr Ancel Keys – to study the effects of human starvation on the human body.In that research, which began at the University of Minnesota 60 years ago, 36 young, fit, healthy and sane young men agreed to starve themselves for six months.They halved their calorie intake. All soon started to develop obsessions with food, doing excessive physical exercise, and binge eating.
DR CECILIA BERGH:They displayed all the symptoms that you see with our patients – with our Anorexia and Bulimia Nervosa patients.
ROSS COULTHART:Per Sodersten and Cecilia Bergh believe that Minnesota is the crucial element to understanding eating disorders… and the best way to treat them. It proved that fit, sane, people could develop eating disorders, with all those psychiatric symptoms, just by starving themselves.
PROFESSOR PER SODERSTEN, KAROLINSKA INSTITUTE, SWEDEN:There are two risk factors for anorexia and eating disorders in general. And that is too little to eat and too much physical activity and then all sorts of things emerge as the phenomenon develops. And we say that all the symptoms you see in an eating disorder patient have emerged from these two risk factors.
ROSS COULTHART:Anorexics have a compulsion to exercise… anything to burn off the calories they may have consumed.Going on long runs while dieting and studying hard at school are the reasons why Gemma slid into her illness.She always refused to believe the psychiatrists in Australia who treated her, and told her that her illness was a result of her mother’s strong character.
GEMMA BOND:I knew Mum had nothing to do with it. But when it’s being drilled into your head every day in hospital you can’t help but believe some of it.
Q: What do you know now?
A; None of it is correct in that respect. I think my Mum was in tears more than I was at some stages in Australia because she felt so guilty or at least the hospital made her feel so guilty.
Q: Has it helped your relationship coming here?
A: Oh 100 per cent. 100 per cent. I’m now just my Mum’s daughter again. I’m not her patient as such. She had to look after me because what she had been told she did.
ROSS COULTHART:Gemma Bond’s mother Caroline is a surgeon, used to treating patients of her own.But nothing prepared her for having to help her own daughter fight anorexia and the impact it had on her family..
CAROLINE BOND Gemma’s Mother:It feels as if the whole family has anorexia. We’ve just been smashed to bits. Someone else used the word disembowelling of the family and I would agree with that completely. We’re all asking ourselves did we do something. We’re all wanting to do something. We all feel totally powerless.
ROSS COULTHART:It’s a gradual treatment – taking just over a year to put at least three-quarters of patients into remission. But Gemma Bond has no doubt even after a couple of months that it’s working.
GEMMA BOND:Q: That’s changing the way you feel about eating food?A: I feel safe with the meals I have here. Never did I feel safe in Australia.
ROSS COULTHART: Per Sodersten and Cecilia Bergh want their research to be trialled elsewhere in the World to confirm it really is the breakthrough they believe it is. Their success in treating hundreds of young Swedish women so far, is powerful evidence they may well be right. Women like Helen Prim. Helen’s struggle with anorexia began when she was 16. Like so many of those with the disease, she couldn’t rid herself of the awful obsessions that made her want to starve herself.
HELEN PRIM:It got really serious. I couldn’t think of anything other than food and getting thinner and everything else in my life was put aside
ROSS COULTHART:Four years ago Helen started treatment at the Karolinska Institute clinic and, barring any relapse, by at the end of next year she will be deemed ‘cured’.
HELEN PRIM:Q: So you’re not technically a cure yet?
A: No
Q: Do you feel cured?
A: I feel cured. Sometimes I can think that life would be better if I was thinner or if something else is bad I can think OK if I don’t eat everything will be better. But every time I think that something else in my head tells me ‘this is stupid, you’ve tried it and it doesn’t work.’
ROSS COULTHART:Few conventional treatments for eating disorders monitor their patients for any more than a year after treatment. About 40% of those patients relapse.What makes Karolinska’s treatment results extraordinary is that not only do three-quarters of its patients get better in a year, 90% of them like Helen, are still well five years later.
HELEN PRIM:Now it feels really good. I have a life and I don’t have to control with food.
Q: You’re getting married?
A: Yeah I’m getting married next year
Q: Did that ever seem possible to you three or four years ago?A; No I didn’t think that way I was focused on food and food and getting thin.
Q: Were you ever frightened of dying from your eating disorder?
A: Well dying sometimes seemed like a way out because when you’re in that thing you can’t see a way for your fully recovered or a way out. So yeah.
Q: It makes where you are now all the more miraculous doesn’t it?
A: Yeah.
ROSS COULTHART:Helen Prim sees herself as living proof that the Karolinska treatment’s focus on eating behaviour is the key to beating this disease.
HELEN PRIM:They didn’t treat you like a sick person, like a very ill person. They just focus on the eating not the psych – the problems in your head. Because I think when you eat right, the problems in your head slowly disappears.
ROSS COULTHART:Because those psychiatric symptoms diminish as patients re-learn how to eat again is what suggests to Cecilia Bergh that eating disorders are not a mental illness at all.
DR CECILIA BERGH:We are measuring carefully psychiatric symptoms every six weeks during treatment and we see that the obsessional compulsive symptoms as well as depression and anxiety decreases when ah the eating behaviour normalises and as an effect of that the BMI or the weight goes up.Q: So as they learn how to eat again, the psychiatric illness goes away?A: Correct.
ROSS COULTHART:Eleven weeks into her stay, Tess, a Bulimia sufferer, is slowly getting better.
MARIE STANWAY Tess’s Mother:The psychiatric symptoms of anxiety and you know obsessions relating to behaviour and depression. I see them going. I see my daughter coming back as the person that she was.
ROSS COULTHART:Tess’ mother Marie is getting ready to head home, but Tess will stay in Sweden. Her father John and brother Jack have flown in to take over the support role.
MARIE STANWAY:I’m looking forward to going back home, getting on with my life. Looking forward to the family being together and just being normal.
Q: Did you ever think you’d get there?
A: … I always hoped I would. I never gave up hope. That was I needed to have the hope to keep going.What I’d love to see is this opportunity that I think we’re very fortunate to have had is available to people who want it.
ROSS COULTHART:Michael Carr-Gregg is another of Australia’s top psychologists specialising in adolescent health.At his own expense He travelled to Sweden last year to see the Karolinska treatment for himself, after a former patient he was unable to help with conventional treatment got better there.But He tried and failed in his efforts to get a report of her dramatic improvement even reported accepted by the prestigious Medical Journal.
DR MICHAEL CARR-GREGG - Psychologist:It is shameful that psychiatry and particularly those elements of psychiatry dealing with eating disorders have rejected this notion out of hand.
Q: There are people in the psychiatric profession who claim that conventional treatment is working?
A: So put your treatment up against the Karolinska Institute model in a trial, that’s all I ask.
DR CECILIA BERGH:We would very much like to perform such a study. We have initiated discussions for years but the psychiatric community has so far said they do not want to participate.
Q: Do you find their explanations for why they do not want to do a comparison convincing.
A: No. The psychiatric community could very well be right. It could be a psychiatric illness, but no-one has shown that the psychiatric illness causes anorexia nervosa and as long as no-one has shown that anorexia nervosa is a psychiatric illness, I think we should use the results we have today.
ROSS COULTHART:Cecilia Bergh and Per Sodersten are enthusiastic about the prospect of a trial of the treatment they have developed here in Sweden. They hope it will be trialled elsewhere in the World. And already they’ve opened new clinics in San Diego and Amsterdam.They see it as vital that the results they’ve achieved are replicated in other trials so that the Karolinska treatment can become an accepted therapy in mainstream medical institutions..
PROFESSOR PER SODERSTEN:I think the first evidence we have produced here so far is that the treatment is effective. I think the most important step is to compare this treatment with other types of treatment.
Q: So you’d like to see a replication of your results in Australia?
A: Of course, and all over the world. As soon as someone has a good result in whatever field of endeavour it needs to be replicated and this is no exception.
ROSS COULTHART:Today’s weigh day for Gemma.Gemma accepts she has to put on weight to get better but as she’s still in the grips of the disease, knowing she’s putting on weight is unbearable..To stop patients dwelling on it, they aren’t told how much they weigh.Gemma’s gained the right amount.
CAROLINE BOND:Gemma’s strength to combat this disease that’s what I see is improving, at the moment they are giving her that control, that facility to say this is what I can do to push the disease out of the way.
ROSS COULTHART:Nayna is well enough now to live in the apartments next to the hospital.Next week it’s back home where she’ll be monitored by Karolinska another four years.
GERALD PURCHASE:The child that I thouoght had gone forever has come back. The first sign that we saw that something was starting to change was a little twinkle in the eye. Nothing physical, in fact her weight went down slightly, but just a little twinkle in her eye and just a little naughtiness and the ability to play and be a little bit silly. That was the first sign that something was ok
ROSS COULTHART:Today is her farewell session
NAYNA PURCHASE:Something has just clicked inside of me. I can’t explain it, it’s just something inside.
DR CECILIA BERGH:You feel very good and you are so happy for her and for her parents and her friends that she will now go back to school and start to face a life of being healthy.
ROSS COULTHART:But for these young women, it will take years before any of them can feel confident they’re cured of their eating disorders.
GEMMA BOND:I’ve made so many friends who’ve been in the similar situation as me and I’d really like them to have the same opportunity as I have been given.
Q: Because you think this place works don’t you?
A: Yes I do. And I’m only half way through treatment but I’m certain this place works.
ROSS COULTHART:The reason they want their story told is because they believe there may finally be a solution to a disease that destroys so many young lives.
DR CECILIA BERGH:You get rewarded every day when you see the patients become healthy and also that the families are complete again, especially the mothers often who blames herself for doing something wrong, or had done something wrong and there is nothing wrong with the parents.
Q: Are you confident that Nayna, Gemma and Tess will all stay well?
A: Oh yes. I’m sure they will stay healthy for the rest of their lives.
END