Fat Files - Living on Air
(Shown on BBC) Thursday, 21st January 1999
NARRATOR (JACK FORTUNE) In 1945 a bizarre experiment was carried out. 36 men were starved for 6 months to see what would happen. Their brains and their hearts began to shrink, their reflexes were reduced and their body tissue decreased by 40%. But perhaps the most interesting effects were on their minds. The men began to behave like people suffering from eating disorders. The starvation study helped to explain the distorted world of anorexics and bulimics.
RACHEL FENTEM When I was trying to lose weight - and that was my main focus - food was like an enemy. I had to eat, I felt disgusted with myself, I was very fearful of food. I still do have a lot of those fears now. I know that's not going to go away overnight.
NARRATOR A family study has found possible genetic causes of the conditions.
BETSY WIEST I began to notice that my 7-year-old daughter was not eating and when I asked her why she said well Mommy, I never see you eat, and I knew at that moment in time that I had to dig deeper and I had to do whatever it was to learn how to live with this in a healthy way. There's no way I want my daughter to have to go through the feelings and the experiences that I have.
NARRATOR The strange differences between anorexia and bulimia are providing a key to understanding what causes them both.
HILLARY CHILDS I don't like being like this, but this is has been so long I've been this weight that it is just normal, so to, to do something, anything out of the normal for anybody is very, is always scary, so for me to gain weight is just hugely frightening.
NARRATOR People are confessing to eating disorders in increasing numbers. There appears to be an epidemic on the way. Nowadays no-one is immune, neither the aristocracy nor pop stars, and there is parental panic that schoolgirls will fell prey to the diseases. Anorexia and bulimia are considered to be modern phenomena, but actually eating disorders have existed for hundreds of years. In the 1890s sufferers were photographed for the first time. They are seen as culturally-driven disorders, but new scientific evidence is suggesting that there is more behind them than simply the desire to be thin. Rachel Fentem became anorexic at 13. Now 19, she is in her 6th month of treatment in hospital.
RACHEL FENTEM The reasons that I wanted to eat less and lose weight weren't because I wanted to be a size 8 or anything like that. It was more that I started a diet and it sort of filled a gap in my life, it almost fulfilled a purpose and became, it became my way of coping with life and the difficulties that I was having. It was almost like a screen that I could hide behind. It meant that I didn't need other people, I just had anorexia and anorexia became my best friend.
NARRATOR Anorexics are defined as those who restrict their eating and lose at least one-third of their bodyweight. Bulimics binge on food and purge by being sick, sometimes up to 20 or 30 times a day. 200 people a year die of the diseases in the UK, the highest rate for any mental illness. Treatment is desperately needed. Revolutionary new research suggests these complex mental states could be caused by subtle changes in brain chemistry. Scientists have been struggling to understand the diseases in their attempts to find a cure. At last they hope they are on the brink of achieving this.
DR WALTER KAYE (University of Pittsburgh) What's important here is trying to come up with better treatments and also prevention. In terms of prevention if we ultimately, and it's not going to happen soon, but in, you know, years to come if we understand exactly why people develop eating disorders maybe we can identify people before that even occurs and do whatever, you know, will be available to prevent these disorders from occurring. Anorexia, you know, has the highest death rate of any psychiatric illness and, you know, would be certainly merge, major step forward if we could prevent this.
NARRATOR Hillary Childs is bulimic and has been ill for 7 years. She is 22, weighs only 4½ stone and is preparing to go into hospital. If she continues to lose weight at this rate she could be dead within a month, so she has decided to readmit herself, her 7th hospital stay in 5 years.
HILLARY CHILDS I mean I'm going in now because I don't want, I've been a lot worse than this and I don't want to be that way again. Like he had to carry me into hospital my last admission and I won't do that again. I, I've got my pride and I might not be very big but my pride is huge. I've always felt bigger than everybody else, I always felt dumpy if you like and it got very, very stressful at school and I decided I wanted to be a different person. I, I think I sort of really thought that everything would change if I changed and I saw all the, all the popular people at school were beautiful and slender and, you know, delicate, so I thought if I became like that it might, you know, change the way people treated me. I left school and lost a lot of weight and I got quite sort of fit and healthy and I looked quite good and it unfortunately couldn't stop.
GILL TODD (Head Nurse, Eating Disorders Unit, Maudsley Hospital) The problem with this illness is because it's mostly women and it's always linked to dieting and modelling that people think that people aren't really ill and so they're not really mentally ill at all and that I don't think is a helpful thought to have because this illness kills people, it runs a chronic course just the same as schizophrenia, it destroys people's lives, it destroys families and people aren't doing it just to, just to be difficult.
NARRATOR So what is it that drives these bewildering diseases? Why are these young women killing themselves? The Minnesota starvation study provided some extraordinary clues that led to a long held over-simplification of the problem and its treatment. At the end of the Second World War the Americans were worried about the effect 10 million starving Europeans would have on the political balance and were desperate to find out how starvation would influence their behaviour. 36 conscientious objectors volunteered to help with the experiment.
MAN There's (NAME) Miller.
MAN Wesley.
MAN Wesley, yeah.
MAN Lewis Wesley. He's making violins now.
NARRATOR One of the researchers on the experiment wanted to work out what were the most efficient methods to re-feed the starving Europeans.
DR JOSEF BROZEK (Minnesota Semi-Starvation Experiment) This was in the 40s, mid-40s, war was on, food became in many parts inaccessible, in fact in Leningrad there was genuine starvation, so we were aware of the need for more information about re-feeding. The focus of this study, the focus of this study is on re-feeding and everything else is subservient to the question: what is the optimum way to re-feed people who have gone through deep starvation?
NARRATOR They were given half their normal food intake. After 6 months they lost one-quarter of their bodyweight. Then gradually psychological effects began to emerge. It started with an obsession with food.
MAN Just the mention of food in normal conversation, i.e. if someone used the expression 'food for thought', that food you know that made you stop and, and think about food.
MAN Several people...
NARRATOR For some the obsession with food was to change their lives.
MAN ...to change their career goal (TALKING TOGETHER)
MAN ...chefs.
MAN And particular, switched over from just engineering to refrigeration engineering to preserve food.
MAN Yes.
NARRATOR The similarities with anorexia and bulimia are startling.
RACHEL FENTEM It does just take over your mind so much especially when you're starving. I couldn't even watch the television or a film without worrying about what the people in it were eating, or not eating.
BETSY WIEST I love the smell of food, I love to cook food, I serve food to other people, I would have elaborate dinners in my home and I was very busy making sure that everyone else had a full plate and they were enjoying it.
HILLARY CHILDS I won't throw food out. It's a waste, but I don't actually really eat anything anyway, you know. I can't understand why I'm like that. I'm very pernickety about wastefulness.
NARRATOR After 6 months the volunteers were allowed to eat normally and they were soon back to their original bodyweights. They left the experiment as recovered men. For doctors treating eating disorders this study said simply anorexics' obsession with food was due to their starvation, so if doctors could persuade their patients to eat and return to a normal weight the eating disorders should not recur, so force feeding became the treatment of choice. It was a tragic misinterpretation of the study.
WALTER KAYE In this particular study the consequences of starvation and re-feeding do look very similar to eating disorders, but again I think that you have to ask yourself the question: did anybody end up with an eating disorder, did they go on to have anorexia or bulimia nervosa? And I think the answer is no again suggesting that simple starvation itself isn't enough to cause these disorders. That you have to have some risk, contributory risk factors to actually end up having an eating disorder.
NARRATOR For Dr. Hans Hoek the most obvious risk factor for developing an eating disorder was to live in a Western society where the pressure to be thin is enormous, so he decided to go to Curacao, a Caribbean island off the coast of Venezuela. Western cultural pressures have not all reached Curacao. It is one of the few places left in the world were fat is considered beautiful. What Hook wanted to know was whether there was a hidden group of anorexics, or whether it just didn't exist.
DR. HANS HOEK (The Hague Psychiatric Ins titute) I had to, I had this idea also I thought I'd never heard anybody speaking about an eating disorder. All the doctors I spoke, I asked them did you ever see it? No, they'd never seen it.
NARRATOR For 3 years he searched high and low for the diseases by meeting with mental health workers and doctors and interviewing hundreds of patients to see if there were undetected cases.
HANS HOEK Can you tell me what was the highest weight you have had.
NARRATOR He screened 144,000 records and examined 291 of them in depth, looking at people who had symptoms similar to those of the diseases. Finally Hoek found 8 cases that he could diagnose with certainty as anorexia nervosa. Curacao is a small place and 8 cases reflects the exact proportion found with it in Europe.
HANS HOEK My own view about eating disorders has changed from rather social-cultural oriented towards the, the importance of more neural biological factors in the aetiology of eating disorders.
NARRATOR The belief that eating disorders are due to a slavish desire to conform to aesthetic ideals has always been questioned by the sufferers themselves.
HILLARY CHILDS I find it's very difficult because a lot of people say, you know, just pull yourself together, it's very faddy, it's, you know, it's a woman's thing about it's an issue of weight really and I don't think it is. There's a lot more to it than just weight. That's very, that would be very fickle for me to destroy my life this much, to mess myself up this much just because I want to look good. I mean if I wanted to look good I wouldn't be looking like this now 'cos I don't look good now so that's silly in itself. It's, it's far more in, in my head than in my body.
RACHEL FENTEM It does take a lot of will-power to starve yourself. It's not really something that is very pleasant, so I certainly felt I got a lot out of it, but now I'm much more able to see the negative sides as well, but it did mean I was isolated from friends and family. There were a lot of things that I couldn't do and I do feel now that I've wasted 6 years of my life really, but having said that I still don't feel ready to give it up completely and I know it's going to stay with me probably for a long time.
CHILD (INAUDIBLE REMARK)
BETSY WIEST ...tickle and kisses now, OK.
NARRATOR Betsy Wiest is 37 and has had anorexia since childhood.
BETSY WIEST I had a very happy childhood. I had all the advantages in the world. I had loving parents, I had 2 sisters who I, I adored. We travelled, we had lots and lots of wonderful things happen to us. I had the best educational opportunities, so there wasn't any one thing. I truly believe in my case that I was born with it. It didn't start out by looking at models and saying I want to be that thin. There was never one particular incident or somebody made a remark that would have set me off. It's just always been a part of my life.
NARRATOR Betsy's doctor decided to find out if she was right. Walter Kaye first became interested in the field 20 years ago because he thought the diseases had been around much longer than the cultural pressures to be thin.
WALTER KAYE We are very interested in trying to find out what kind of factors caused eating disorders in the first place and there's a problem with studying people who are in the midst of an eating disorder because they become malnourished and that in itself creates a lot of behavioural changes and so if you study people in the midst of an eating disorder it's hard to tease apart what cau, what's cause and what's consequence.
NARRATOR Kaye's solution was to study families. Walter Kaye lives in Pittsburgh, a city with a population of 360,000 and there are only 120 eating disorder patients in his unit. But Dr. Kaye needed at least 500 people to test his hunch that eating disorders run in families, so he set up an international, multi-centre study.
WOMAN What the heck is cous-cous?
WOMAN It's like a rice or a...
NARRATOR One of the most surprising case histories is the Sims family who live 300 miles away in Philadelphia. Sisters Tina and Lisa both have an eating disorder.
WALTER KAYE We very carefully looked to see whether if you had anorexia nervosa whether you just had people with anorexia nervosa in your family or you had other kinds of disorders, and what we found actually now has been found by some other groups also is that eating disorders seem to be transmitted together so that if you have anorexia you, your family member may have bulimia nervosa, not necessarily anorexia, so there's some kind of common eating allergy between anorexia and bulimia.
NARRATOR Tina is bulimic and Lisa is anorexic.
LISA SIMS Food and dieting was always an issue in my family and I just remember one day thinking oh, if everybody's going to lose 10lbs then I'll lose 10lbs. I guess I was pretty good at it, you know. In the beginning my family didn't know what to think 'cos nobody ever heard of it, nobody ever, I don't think anybody they knew or nobody I knew ever had anything like that, so they didn't know what to do.
TINA SIMS I can remember going to the shore with her and she looked like a skeleton with a bikini on and, so I said to my Mom we've got to get her in the hospital, we've got to do something because she's going to die. I thought I was different because I wasn't under eating, I was doing the opposite, so I guess I figured it wasn't the same, you know, and it was alright to talk about somebody else and how, you know, how to help them, but not myself.
Parsley, thyme which I don't even know...
NARRATOR At least 10% of Walter Kaye's patients had other people with eating disorders in their families, so he began to think there could be a genetic factor that is important in causing the diseases. It has been known for over 50 years that eating disorder patients have a personality type in common.
LISA SIMS I don't think anything that, usually like...
WALTER KAYE And what we think at this point is there's some risk for an eating disorder that's transmitted independent of other psychiatric disorders.
NARRATOR Betsy looked back at her own family history and found something interesting.
BETSY WIEST I never met my father's mother, but I do know that she died at a very young age, possibly early 40s, and she died in a hospital and I know that she had stopped eating. Now I don't know whether she was diagnosed as having anorexia. I don't think back in, in the 1940s that, that that was really a diagnosis that was given to people, so I, I wonder often if there really isn't a genetic link. The bottom line is the disease wants you dead and there's no way in the world that I want my daughter to have to go through what I've gone through.
NARRATOR It is this possible family connection that had made Betsy concerned for her daughter. Walter Kaye went back and re-evaluated his data. He thought he could see what was being passed on. He believed it was an obsessive, compulsive personality disorder.
WALTER KAYE What we found is that obsessive, compulsive personality disorder that reach a perfectionistic behaviour tended to be very common particularly in the parents of people with anorexia nervosa.
NARRATOR Obsessive compulsive personality disorder manifests itself as rigid perfectionism and an inflexible view of the world, so could it be that the genes for this personality disorder predisposed people to develop anorexia or bulimia?
BETSY WIEST Became obsessive about my weight and obsessive about my clothing size. I like things in my life to run in a certain order. I'm learning to deal with it, I'm trying to really not sweat the small stuff. Things that, that aren't important I'm trying to identify them as not important things. I'm trying to look at the value of people versus things. I don't have to have an immaculate house anymore, I don't have to make the beds if we don't have time. If my laundry sits a day I don't care anymore, but these were things that at one time were very important to me.
NARRATOR The chronic eating disorder cases at the Maudsley Hospital in London all have obsessive, compulsive personalities, and they are made even more obsessive by the effects of starvation. They think about food 24 hours a day.
WOMAN Well I write down all the recipes you get off the telly. I must have over 1,000.
(TV PROGRAMME SOUND)
NARRATOR The patients can also be obsessive about other things, such as cleanliness, tidiness and exercise.
GILL TODD We have somebody who can only watch the television at a certain time of day without being interrupted, so she has to video all her programmes and watch them through and if somebody comes in then she has to start all over again. The most difficult time of the day are the 3 main meals. People jump up, throw plates and cups and drinks. They storm out, they come back, they vomit and it's very, very stressful in there because people'll be angry, they'll be cutting up their food, they'll be trying to hide food, they'll be rude to the staff, rude to each other, they won't talk. It's a very volatile situation in there.
NARRATOR So what is it that drives this obsession in her biology? The first and most obvious place to look was a system of chemical messengers in the brain - the serotonin system.
DR DAVID COLLIER (Maudsley Hospital) As the serotonin system is a good candidate for involvement in anorexia nervosa because its functions match the sort of features of the illness, such as reduced appetite, reduced sexual behaviour, depressed mood etc.
NARRATOR There is an area inside the brain called the hypothalamus which is known to govern mood and appetite, amongst other things. Inside the hypothalamus brain cells communicate with each other via neuro-transmitters, one of which is called serotonin. The neuro-transmitter is released and seeps across the gap between neurons transmitting electrical impulses. It acts as a chemical messenger. David Collier is a member of the Maudsley research team and he is trying to track down the genes involved in eating disorders.
DAVID COLLIER We got involved in a genetic study to look throughout the whole human genome to try and find genes for anorexia, but because of our interest in the serotonin system and its role in eating we thought we'd have a look at that and see if we can identify any genes from their role in behaviour and the one we picked first was the 5HT2A receptor because that's known to be involved in regulating feeding and drugs which block it are known to cause a weight gain.
NARRATOR Collier has found a variation in the gene for the serotonin receptor in many anorexics. This could men these receptors are over-active and therefore behave as a powerful appetite suppressant and make the anorexics feel anxious.
DAVID COLLIER We're actually very surprised to find that a particular variant of the 5HT2A receptor was more common in women with anorexia than it was in the control population. It was about twofold more common in the population with anorexia, so our next goal is, is first of all to try and find other genes that might be involved in anorexia, to try and better understand how the serotonin system might be involved and to really try and work out how these genetic risk factors interact with environmental risk factors such as social and cultural stress.
NARRATOR Stress and anxiety, and their relationship with serotonin, are factors that Walter Kaye is also interested in.
WALTER KAYE And as we're learning more about this we're finding that, for example, the serotonin system may be a very important system in terms of things like anxiety and worry and obsessionality and doing things, you know worrying about the future consequences of what's going to happen to you which are traits that we see in people with eating disorders and so they're going to have an inherent kind of, you know, bias towards perceiving the world that way.
NARRATOR Tragically, bulimics and anorexics are in a constant state of anxiety which is caused by their high levels of serotonin. Unfortunately, anxiety raises the levels of serotonin even more and they are caught in a vicious circle. Most psychologists believe that sufferers relieve their anxiety by resorting to obsessive behaviour, but Kaye has a theory about why anorexics and bulimics use starvation to escape anxiety. He is convinced there is a biological reason for their obsession with restricting food.
WALTER KAYE Now people with eating disorders often tell us if they don't eat they feel better and maybe there's a physiology to this and the physiology may be that this may be a mechanism that's unique for them but not for other people in terms of making themself feel better.
NARRATOR Kaye looked at the serotonin system to examine the link between serotonin and food. Serotionin, the cause of the sufferer's anxiety, is made from an amino acid, tryptophan, which comes from food. If no tryptophan is taken into the body serotonin levels will drop.
WALTER KAYE Starving yourself drives down the amount of tryptophan that goes through your body into your brain and it may be a way of reducing brain serotonergic activity so it may be that people have too much serotonin. This makes them kind of anxious and obsessional, it's not a very comfortable way of being and that they find that by dieting and starving themselves it makes themself feel better.
NARRATOR The difficulty is if the patients are doing something that makes them feel better how can the cycle be broken?
HILLARY CHILDS In the same way as somebody would come home from work really exhausted, unwind and have a drink, I'll come home from a hard day exhausted, have a binge, make myself sick and feel better. I feel relaxed. That's how I deal with my problems and it's not very pr, I'd like to find another way to deal with it.
NARRATOR Hillary has been in the Maudsley Hospital for a month now and is making good progress. Her weight has gone up to 6 stone and she hasn't vomited since she arrived.
GILL TODD If Hillary hadn't started talking about her illness then I think Hillary would have died. For somebody who's been as severely ill as Hillary I always worry that anything, any backward slide or any difficulty that Hillary has unless she seeks help quickly that will just overwhelm her and then, of course, the illness is so life-threatening that she'll die even if she didn't want to die, but I, I feel at the moment quite positive about Hillary.
NARRATOR Hillary is working with an occupational therapist and is responding well to treatment.
HILLARY CHILDS I can't shop normally and for me shopping is such a big deal and I'm so concerned with it and it's not like how I'd like it to be, it's just like shopping because I need to. I need, need food. It's like having to, it's quite stressful just having to decide one thing when I want it all and it get, I get really anxious. There's no real set foods that I do or don't eat because it's not the food that I'm eating it for, it's just for the sort of, it's, it's like a destresser. Vast amounts of food that I can't even remember how much I can go to the shops 3 or 4 times in a binge and a binge cast last from like 7 in the morning till 11 at night. I mean I, I kind of like prepare the flat before I would go out and get everything laid out and then do the shopping and sort of like while one thing'd be cooking I'd be cooking something that would take less time and the thing that would be the longest having to cook could go in first and then there's stuff that I could eat while I was waiting for that to be done, sort of like floppy foods. Dry foods are no good, but just lots of, lots of fluid. I mean it's a no win situation. I feel dreadful doing it, I feel guilty afterwards and I feel physically awful afterwards as well, so it's, it's like there is nothing good that comes out of it at all.
WOMAN OK, so what's the first thing we're going to get.
HILLARY CHILDS Well I want to get a tomato.
WOMAN Right, OK.
HILLARY Do you want one as well?
WOMAN Yeah I think I'll get... Are you going to get a larger tomato or...
HILLARY Well I want to get just a normal one.
WOMAN Right, OK, I'm going to get... OK.
NARRATOR Because of her obsession with food, Hillary has to learn how to shop.
WOMAN Do you want to scribble on there?
HILLARY CHILDS OK.
NARRATOR They have to prepare for a session like this quite carefully, by making a list of foods to buy.
HILLARY CHILDS Well I thought I'd do a roll again and maybe do some tofu in it.
WOMAN Yeah, OK.
HILLARY If they haven't go tofu maybe some avocado.
WOMAN Right, yeah.
WOMAN If we need avocado it's back there.
HILLARY Yeah I don't, I don't know. I really want to, I don't really want to do that, I just find it a bit...
WOMAN Right.
HILLARY ...'cos I, you know, I've decided now and it's a bit difficult to change my mind in here 'cos there's too much stuff to change, think about.
WOMAN And you know what sort of roll you're going to get?
HILLARY CHILDS Yeah the long ones. Well they're the only ones they do.
WOMAN Alright, are they the ones at the deli or... (Yeah) Yeah, you have one of those. OK and if they haven't got any?
HILLARY They have. They've got loads of them.
WOMAN Are you sure?
HILLARY Yeah. They haven't got any.
WOMAN OK, so you don't, you don't usually have (TALKING TOGETHER)
HILLARY: ...might have wholemeal.
NARRATOR The bingeing that Hillary has to control is an excessive response to a powerful biological drive that she cannot overcome because bulimics cannot resist the necessity to eat. What sets anorexics apart is that their bodies can resist the need to eat. Could this be explained by a biological difference between the two disorders? Rachel is leaving the ward after a 6 month stay, her third in 6 years. She's going to Cambridge University to study classics. For Rachel the prognosis is difficult. 30% of anorexics return to hospital having lost all the weight they had gained.
MAN Hello.
RACHEL FENTEM Hello...
I know that for me as soon as I start losing weight it's very dangerous because it is so addictive, that losing a little bit of weight is never enough and so I think it's going to be very important for me to keep telling myself how much more I'm going to get out of my life by going to university and focusing on all the positive things that I'm going to do with my life and I'm also quite worried that if there are times both in the immediate future and maybe later on that are particularly stressful for me that it, the anorexia's always going to be something that I'll know that I can return to and that in itself might be a danger and that I will use it as a coping strategy for life.
NARRATOR What is it that stops anorexics eating when there is a fundamental drive in the human body to consume food to stay alive?
(ACTUALITY CHAT)
Janet Treasure, Director of the Eating Disorders Unit at the Maudsley, is investigating how this need to eat can be bypassed.
DR. JANET TREASURE (Director, Eating Disorders Unit, Maudsley Hospital) In anorexia nervosa the drive to eat can be inhibited and yet we know in normal people who are starved they will kill each other and do all sorts of morally repugnant and eat all sorts of foodstuffs that, you know, normally people wouldn't touch and yet that doesn't happen in anorexia nervosas so there's some aspect of the appetite system that isn't working as it does in normals.
WOMAN I can't say why I go home and just automatically lose weight again and exercise and, and concen, focus so much more on my weight going down. I can't say why I do it. You know that's what's so puzzling to me why do I do it?
WOMAN It's just one massive fear. It's like, yeah, being scared of spiders. It's a fear of food and it is frightening.
WOMAN It hits you when, most unexpectedly. (Yeah) When you least expect it, just wham bam.
JANET TREASURE We do know that the treatment of other fears if you can get people to do it, if you stop them avoiding it, gradually the fear diminishes and that's the intriguing thing in anorexia. It doesn't seem to diminish does it, it seems to persist.
NARRATOR Three weeks after leaving, Rachel has returned to the ward as an out-patient. She has lost a considerable amount of weight and is worried about losing more. She wants to get better but she can't shake off the disease and she can't work out what caused the problem in the first place.
RACHEL FENTEM I spent a lot of time over the last 5 or 6 years talking to people about why my eating disorder started. I do have very high goals. I'm a perfectionist and quite obsessional, very sensitive and, and then also circumstances. Things that are going on for me at home, the relationship between my parents and school, so I think yeah, that rather than one particular event, but it's still very difficult to understand and quite possibly I could be somebody who has had the same things happen to them that I have and that, that wouldn't develop an eating disorder, so I find it really hard to understand so it must be impossible for anyone else to understand.
NARRATOR This link between anxiety and stress and eating disorders made scientists at the Maudsley look at the biology of the stress mechanisms in the body. The body has an in-built system to cope with extremely stressful emergencies. This is commonly known as the 'fight or flight' response.
DR FRANCES CONNAN (Maudsley Hospital) In an acutely stressful circumstance, let's say you're on the top floor of a burning building, you need to be focused on how to get out of that building safely, you need to be physically at your peak, you need to be ready to fight, flight, get out of there in one piece. You're not entrusted in other people, other situations, but just on getting yourself out of that burning building, so it's highly adaptive for your pulse to be racing, your blood-pressure's high, your muscles are pumping full of blood ready for you to be active and in that circumstance the last thing you'd want to do is start feeling hungry and have to sit down and eat something, so hunger is banished, sex drive is banished, sleep is banished and you're ready for response for active, getting yourself out of this stressful situation.
NARRATOR The body's response to stress takes the form of a cascade of hormones which starts at the hypothalamus and ends by producing cortisol and adrenaline, stress hormones which are pumped around the body. As well as filling the muscles with blood and increasing heart-rate coritsol and adrenaline crucially suppress appetite. When the stress dies down the hypothalamus releases another hormone - AVP - which switches the appetite back on.
FRANCES CONNAN Now if the stress becomes persistent then what would normally happen would be that AVP would become more dominant in the access moderating the stress response, allowing the return of some appetite, but if that doesn't happen, as we think is the case in anorexia nervosa, then the anorexic is left with an acute stress response that's happening chronically day in, day out. They're unable to eat, they're in a permanently aroused state, but permanently in the state you would be if you were that person trapped on the top of the building wanting to get out of the fire.
NARRATOR So the Maudesly team believe the AVP switch in the anorexics may be faulty so that the individual is locked into a system of repeated chronic stress.
FRANCES CONNAN This has made me think very differently about patients now. You're a bit stressed, your heart's racing a bit, can only think about what's happening here and now and it's quite an uncomfortable way of feeling and to think that they feel like that day in, day out must be absolutely unbearable.
NARRATOR And what happens if there is extra stress? Rachel is now at Cambridge and is finding it difficult to cope.
RACHEL FENTEM I could see what was happening, but I just couldn't sort of get back to what I knew I should be eating and to sort of get back on safe ground again. I'm eating very little now. We're talking about 100 calories maybe slightly more, slightly less.
NARRATOR In the last 24 hours Rachel has eaten half an apple. This level of starvation can cause irreversible physical damage.
JANET TREASURE Most systems of the body are involved with starvation in anorexia nervosa. The ones we're particularly concerned about are the ones that don't seem to be as reversible 'cos so many once you replace nutrition the whole thing gets back to normal and the systems that we worry about that aren't totally reversible perhaps are the brain.
NARRATOR The Maudsley team are studying the brains of anorexics. Stress hormones affect a tiny area in the middle of the brain called the hypocampus which moderates the hormone cascade. It seems to be damaged by the long-term excess of stress hormones, and so the loss of appetite gets even more out of control.
FRANCES CONNAN There is indeed damage to the hypocampus, ironically as a result of the high levels of cortisol that these patients experience for prolonged periods of time, but ultimately shrinks the hypocampus and so they get stuck in this vicious circle which fits very much with our experience of treating people with anorexia. We know that very often it's a chronic condition with frequent relapse despite extensive efforts to get people to gain weight.
RACHEL FENTEM I did feel so positive a few months ago and so I feel as though I've let myself down very badly, but I'm also angry with myself for letting down other people, especially my family and I'm angry as well I suppose in a sense that I feel almost as though I've been tricked by the anorexia because I didn't realise that I'd got myself into such a mess again until it was too late. It surprised me almost. I thought that everything was OK and that I'd be able to get back and just put back the bit of weight that Id lost and that'd be fine and then before I realised I was in a situation where I couldn't do that.
NARRATOR Perhaps giving AVP to the sufferers could kick-start the drive to eat and break the vicious circle. The team at the Maudesly are just beginning to wonder if that could happen. Their first experiments are underway. They are testing the hormone circuitry by injecting stress hormones and measuring the AVP response. There are no answers yet.
FRANCES CONNAN Now if we conceptualise this as being an abnormal response to chronic stress then one of the important things we can do in psychotherapy is help patients to cope better with the chronic stresses that they will inevitably encounter in life and by doing so we hope that we can ameliorate, make better, some of their biological aspects of the stress response that blunt their appetite and cause them to become ill.
NARRATOR For patients like Betsy therapy is currently the only option and it's only successful for some people.
BETSY WIEST I am still sick, I'm in weekly therapy, I attend a support group, I'm followed very, very closely by my family physician. I know I can't do it on my own and I'm actively seeking the help. Before I would have just kind of succumbed to the disease and let it take over, but this time I feel as though I have a fighting chance, but it's going to take a long time, it won't happen overnight. This will probably be a lifetime struggle for me.
NARRATOR The new scientific discoveries being made by centres in the USA and the UK might one day revolutionise the kind of treatment available and could bring us closer to preventing the distress that anorexia and bulimia bring to so many.
WALTER KAYE So what's going to be the challenge for us as, you know, I think this next generation is beginning to understand in some way the complexities of behaviour and the inter-actions of environment and, and biology.
NARRATOR But for many anorexics therapy can be difficult to respond to.
RACHEL FENTEM Anorexia is so much part of me. I just can't imagine living without it or what it'll be like to live without it. I do feel quite scared at the moment because I do feel quite ill. I'm scared that I don't know, that part of me might sort of stop working and that might happen without warning, but although I'm scared I still; don't think that I 100% believe that that could happen. But I do want help. I just can't do it on my own.
NARRATOR For further information about the issues in tonight's programme and details of organisations who can help call the BBC Action Line on 0800 888809. Calls are free and confidential. That number again. 0800 88880
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