Chronic Fatigue   Russell Viner

Chronic fatigue, it kind of makes you tired to think about it doesn’t it. It certainly quite a common response, as Chairman said, I am from a new adolescent health service as we call it which has been set up at University College Hospitals London and Great Ormond Street hospital which is the first time that adolescent medicine has gained some kind of foothold within the hospital secondary tertiary academic side of the health service in this country. An interesting development and one we hope will be followed by developments in many other places.

I am going to be talking today about chronic fatigue, hopefully it will not make you too tired as I said. Chronic fatigue is a particularly topical, a particularly confusing topic or disease for many people, most of my colleagues when they think about chronic fatigue have some kind of flight or fight reaction, either withdrawal, how sympathetic stimulation, or flight sympathetic stimulation. It’s something that’s very topical in the media, immensely confusing for most, seems a new illness, it’s only been around perhaps for last 5 to 8 years, there are others who claim that in fact you can trace it right back to the 19^th century as Simon did with ADD. It’s interesting that it has been placed in the mental health section of this conference and I think it’s reasonable in many ways. I am not one that believes it’s purely mental health phenomenon and I think that it’s an illness that superbly illustrates the joys and possibilities of adolescent medicine are working in that interface between organic and psychological medicine trying to remove those barriers and divert the sense of the mind-body cosmic continuum.

Whats in a name? Simon pointed out that with ADD there’s been a long history of development of names, CFS is a most recent term for this rather vague condition, it’s been called many things, I suppose in the 19^th century people are suggesting it would have been called neurasthenia, more recently there’s been whole lot of things, ME - Myalgic Encephalitis or Catamyelitis or whatever you want to call it is the other most common name, Postviral Fatigue had a brief period of topicality, the Royal Free Disease, I am sure Dora can tell us perhaps more about it at some stage, and many other diseases, I am not sure where Iceland Disease came from but it’s certainly up there as well. What’s in a name? The answer is clearly there is this huge number of names tell us that the most prominent things about Chronic Fatigue Syndrome are uncertainty and confusion for us as treating physicians and certainly about it very existence, whether it exists or not, uncertainty about its aetiology, whether it’s psychological, whether it’s organic, whether it’s something else, uncertainty about how we actually diagnose this condition and the literature has been absolutely plagued by differences in diagnosis, it’s almost impossible to compare a couple of different studies done in two different places. Concerns about the natural history and a huge complex about the treatments, so uncertainty is what characterises our response to it.

We must remember that while we are very uncertain others are not and the certainty of many people who deal with CFS I find quite scary in many ways. The media, various pressure groups, ME Society and others who are meant to be active and have a lot to give. But as I said their certainty I found often particularly counter-productive. And those of you who have treated this kind of patients know that often they are particularly certain as to what’s going on, they might have been through a gamut of medical people, a gamut of psychiatrists, they’ve been through alternative health practitioners they’ve been through the lot, and they usually have very clear beliefs about  what’s going on.

The definitions when one is uncertain, one results in a long list. We find that with ADD as Simon said, and it’s certainly true of Chronic fatigue syndrome. The central criteria clinically unexplained relapsing Chronic fatigue for more than 6 month is the centre and core of this condition. These people shouldn’t be fatigued since birth or for the last 5 years or so, all fairly new or specific onset. The fatigue needs to be not due to an ongoing exertion, the exertion often makes it worse, and the fatigue needs not to be substantially alleviated by rest, though it can be a little. And the important thing that psychiatric flavour of what makes a disorder is that the fatigue results in substantial reduction in previous levels of functioning, whether they be occupational, psychological, social, educational or whatever. So they are the most central criteria. Also four or more of the following symptoms must be present or concurrent for more than 6 months and there are quite a number there, particularly short-term memory and cognitive functioning is quite a common complaint, sore throat, tender glands, muscle pains, muscle pain in particular very common, multiple joint pains and headaches in particular, I find among most of the young people we see, headaches, unrefreshing sleep and vague muscle pains. And one of the classic ones is post-exertional malaise lasting more than 24 hours does seem rather unfocused, is it possible to focus it any further, I am not sure.

Exclusionary conditions, to some of us it doesn’t seem that anything can be excluded form CFS but I think we need to be certain that they are. Clearly any active or chronic medical condition that explains the chronic fatigue, any past or current major psychiatric illness. Particularly depression, major depression with a psychotic features, also delusional disorders and others. Alcohol and substance abuse, they say within 2 years of onset and also severe obesity with a BMI more than most of us could ever achieve I think. I think there are a number of problems with these criteria in adolescents, children and adolescents. Many people would suggest than one shouldn’t diagnose CFS in children and I have a lot of sympathy with that belief, in adolescents I think it is reasonable to make that diagnosis. I think we have to remember that all illness behaviours in young people who are within a family system are strongly influenced by parental expectations, responses and management. It’s probably clear that 6 months may well be too long that someone has had Chronic fatigue of some type for more than 2 to 3 months can be called or can be considered as having this entity. And the common symptoms as I said before that we see in our young people are headaches, sleep disturbance, some mild cognitive impairment and major school loss.

There is some recent evidence which may or may not be true that Chronic fatigue is the commonest cause of long-term school loss in this country. Kids with cystic fibrosis, diabetes, they don’t miss school any more, we’ve managed to work that  one out. Chronic fatigue - they miss a lot. The prevalence of this illness is unknown. It’s likely to be less than the prevalence in adults for which we have better figures and people suggest that up to 1 to 2 % of the adult population, that’s probably 2 to 3 people in this room at this moment have Chronic fatigue syndrome, who knows. In children I suspect it’s much less than this, there’s been quite a variation depending on what study you see, 10 to 30 for a 100,000 adolescents from referral studies to tertiary services and up to almost 500 for a 100,000 from symptoms surveys. It also occurs in epidemics, certainly occurs in epidemics within schools. Otherwise in the demographic scale that number boys and it seems to have a mean on sex of about 11 to 15 years.

Aetiology, what causes this illness? I don’t think we know is a very clear answer, there are those on the right wing that say, it’s all psychological. There are those on the left wing that say, it’s all medical. There are others who say, perhaps social. Perhaps I’d like to suggest at some stage that it’s a syndrome, that we need to have a much more complex context of aetiology in causation of this illness. The evidence biologically the big one was Epstein Barr virus, the mononucleosis or glandular fever virus was the big one that the people sought for particularly as fatigue after viral infection is so common. Only about 6 to 10% of adolescent with chronic fatigue syndrome have a clear evidence of a current or recent glandular fever infection. Other viruses, the enteral viruses in particular but others Herpes viruses have been suggested and people have found DNA and various muscle viruses, etc. But there is no good evidence that these viruses are implicated in more than a tiny proportion. If you ask about symptoms there’s certainly a suggestion that viral precipitant may have been around in two thirds of adolescents but then again if you ask most of us had a viral infection in the last month or two so the significance of that is not very clear.

I think it’s very clear that the muscle anatomy in these people is absolutely normal, that the fatigue in centrally mediated in some way. Others have suggested that endocrine the hypophyseal pituitary axis may be involved, but there is very little evidence of that. Other people like in ADD have looked at the brain thinking that the fatigue is centrally mediated. Unfortunately there have been a lot of inconsistent findings and it’s clear that there are no standard structural MRI findings that are characteristic of CFS. Other people have undertaken scans or functional MRIs and others that show some frontal hyperperfusion but the studies have been poor and they have not separated out those with significant depression from those with just the CFS and these kind of changes can also be seen in depression - some of them show brain stem hyperperfusion. At Great Ormond Street we are trying to do an activated brain study to look at a number of these children to see if we can find changes similar to the changes that Bryan Lask’s group have demonstrated using the same technique’s in girls with anorexia. Neurotransmitter changes and that’s something we are going to be looking at as well. One of the big things recently has been about neurally mediated hypertension, the fact is that some report that if you tilt these young people on a tilt table they get postural drops in their blood pressure and some of them have been reported to respond to mineral corticoids and excess of extra salt in their diets. Sadly these findings are not replicable.

As I said there are major problems in distinguishing changes in muscle, in the brain, in other systems from those due to rest and we know that even a month of rest in these youth will give you changes in brain profusion and give you changes in muscle and nerve. Others have suggested some unknown model of toxin giving you immune activation resulting in CNS damage may well be operative however they have not produced much evidence for that. The arguments for this to be a psycho-social or psychological illness either lack a physical cause and objective science, the strong co-morbidity is the theme with many of these young people and the fact that they improve with psychological treatment. The theories are that this is a variant of a somatising depression but this is a somatising illness about secondary gain or that it’s a social illness or a familial systemic problem in that there is a parental alliance with the child about school and other social problems and this maybe some variant of mood health and reciprocacy. The evidence for this - co-morbidity depression is the one that has been most reported.

Depression in adults is present in 30 to 60%, in adolescents there are variable findings up to a third and some suggest 60 to 80% more recent psychiatric control study suggests about 25% have diagnosable major depression without psychotic symptomatology which would exclude this being CFS. The other interesting finding is that the illness in some senses responds to psychological intervention and drug intervention suggesting a psychological cause. Many of these children have much higher somatisation, adolescents have much higher somatisation scores than controls suggesting again it’s a somatising illness and the fact that there is a lot of clustering in families. One’s heart drops when one sees the entire family coming in a wheel-chair. And that suggests that this maybe psychological, equally it may suggest that it’s infective or biological.

There are many problems with suggesting that it’s purely psychological, the consistency of the myalgia, the muscle aches and pains and other symptoms argue against somatisation because we see many children with somatisation, pain syndromes and all sorts of things but it’s a specificity of this that suggests that it isn’t just somatisation. The physical signs some of these people certainly do have enlarged lymph nodules and fever. The relationship of fatigue to enjoyable exertion not just the problems that they are trying to avoid, not just the school, and in fact the desire of many of these young people to get back to normal is urgent desire. And also the lack of clear identifiable organic psychological pathology in many as I said, certainly not all of them that have depression.

A synthethis. If I can suggests that we need in a much more complex way using a bio-psycho-social model at what is going on in that illness that there must be some kind I suspect in most of these young people a precipitating illness, whether it’s viral or whatever where they learn about fatigue, where they may learn some of the secondary gain of having an illness and fatigue. I suspect that these young people are biologically vulnerable to fatigue, I can’t explain exactly where it resides, it maybe in the brain, it maybe in the muscles, but it’s about again risk and resilience factors that we often talk about in adolescent medicine. But these people are biologically  vulnerable to fatigue, they are likely to get more fatigue with these precipitating illnesses, but then there are social or psychological factors that maintain the illness, whether these be in the parents, and I have a very interesting woman tell me the other day that when her child first got ill she watched her every single minutes of the day and responded absolutely to everything that this young girl did and one can see how that would maintain the illness, maintain the behaviour because of that watchfulness, that surveillance. Again cycles of learnt helplessness and disempowerment, some fatigues causes these people to be treated as fatigued, causes them to lose hope in what they can do and they learn helplessness etc. And I think in many ways we cause chronic or increase the chronicity of fatigue in quite a lot of our patients.

Management. As I said many of my colleagues  say to me that their heart sink when they see these patients, they don’t know what to do, they have little idea of where they should be going. The principles of management I think are very clear if I can give you what we do and we are just starting off developing our programmes. I think the first thing and the most important thing to do is to dispense with aetiological thinking. If you are going to be looking for a cause, looking for a psychological cause, looking for an organic cause only, saying to people this is not organic this is psychological, you will probably fail in a great proportion of people. So dispense with aetiological thinking. One certainly must look for a cause, but if one doesn’t find one one says, we don’t know what’s going on, I can’t tell you what is the cause of your chronic fatigue but I know how to treat it. And that treatment should be rehabilitative. We often say to our young people who won’t accept any psychological parts to their illness we say, you have this chronic fatigue, we don’t know what causes it, but the thing that works is to rehabilitate you in the same way as someone with a muscle condition whose cause we don’t know. We can’t magically cure them but we rehabilitate them and we do the same thing for you. The approach must be psycho-social, it must be multidisciplinary, one cannot do it by oneself and it must be family centred. We try and treat the young person by themselves outside their system - you will fail.

The medical assessment. I probably don’t need to go into it hugely, I think it’s extremely important to exclude organic pathology. Many of us are adolescent physicians and we must act as physicians not just as counsellors or whatever. And I think it’s particularly for those who work in tertiary centres it’s important to sign off or draw a line under any further medical investigation. I particularly see numbers of cases who have been to GPs, district paediatricians, city hospital paediatricians and end up at Great Ormond Street, they had this many tests and we are often able to say we’ll do this and no more, you do not need any further investigation. They certainly need psychological assessment, there should be individual and family, and some people do depression scales and quality of life scales, I am not sure that they are particularly helpful. We also want to take a physiotherapy and educational assessment, and some people find fatigue scales useful. What’s particularly important is that a co-ordinator of a multidisciplinary team, someone to take overall responsibility for this investigation exist and for me it’s one of my nursing colleagues Anna, in the audience here.

Treatment. Treatment is biological, psychological and social in our system anyway. Biologically I would give most young people a trial of anti-depressants whether I think they are depressed or not. Many people will disagree with that but I think that many of the new antidepressants have non-specific mood-elevating and energising effects, it maybe that there’s a masked depression there that we are not actually finding out about. Many of these young people have a very significant sleep disturbance, they are awake till 4 and then they sleep till 2 in the afternoon. And the use of melatonin, 3 mg at night about half an hour before they want to go to bed often is particularly useful. Some of these young people have cognitive and attentional problems. We don’t have a lot of experience in using attentional agents for these young people and there maybe problems with sleep with using those agents.

Graded exercise, physiotherapy, structured programme is essential. We get one of our physiotherapists to undertake a fitness assessment and then produce a daily graded exercise programme. Getting good balance of rest and exertion is key and for many of these young people it’s stopping them doing too much. Many will do no exercise for 2 days, get up, feel well, play a game of football and fall in heap for 3 more days. We have to say no, we have to say you will do 10 minutes walking to the front gate and back, the next day you walk 2 meters further and you gradually increase that. This adds structure and control to the day particularly for the young people who just sleep all day, may not go to school etc. the structure of the day is lost and adding structure back is particularly important. Remember one mother pleading with me saying we need structure. Rest is counter-productive.

Re-schooling is absolutely key. A gradual re-introduction to normal school plus or minus home tutors is important. I don’t think that these people shouldn’t be going to normal school. Subjects rather than hours at school are important and we like to get our young people back to doing one subject. One of my young men recently has picked geography and he is going back just to do geography which is about 3 hours a week. Then we add another subject. Psycho-social interventions, providing structure for parents and young people is essential. Family therapy is routine in our service. We sell this to those who will not accept psychological aetiological elements in the chronic illness as a way of helping the parents cope and support them. We also try to look at systemic maintenance factors I’ve talked about. Individual psychotherapy or cognitive behavioural therapy is often useful particularly if the family system will allow, if they will actually buy that there is any psychological element to this.

Prognosis. I think we must remember that the prognosis is generally good in these people. It’s easy to be too pessimistic. There is a high probability of return to health up to 2 years. There’s been a number of follow-up studies that show about two thirds of them have substantially improved after a year or two. However 12 to 20 % will continue to have long-term problems. Rehabilitation works but we don’t have particularly for our services we don’t have good evidence for the treatment at the moment. And that’s something certainly we need to be going on with.

Conclusion. This is a complex illness, to treat it well we must dispense with aetiological thinking, dismissing chronic fatigue syndrome as purely psychological is simplistic, it is almost negligent and you will anger and cause to leave you a number of your patients and it doesn’t help the young people to get better. On the other hand, to ignore psychological element is to ignore treatable illness and extend their illness as well. Rehabilitation is the key, biological, psychological, social, educational physiotherapy and co-ordination and close contact are certainly key and essential as well.

Chairman. Thanks very much for a very balanced and clear account. It’s been very enlightening.

Question: how long will you keep them on antidepressants?

R.V. I’ll give them a three-month trial, if they don’t respond to the first one I will actually give them a second one some kind different balance between serotonin and adrenaline may work for others. I will probably try two antidepressants but it would be in close liaison with the young persons themselves. If it worked I would try it for 6 months and we may a contract to use it for 6 months and then withdraw it and see what happened.

Chairman. Fine if there aren’t any more questions it is a tribute to the clarity of the talk. Our next speaker is Doctor Dora Black who is consultant in child and adolescent psychiatry and has established and founded the clinic for traumatic stress and has special interest in treating bereaved children. She will talk about traumatically bereaved adolescents.

Traumatically Bereaved Adolescents  Dora Black

There are two aspects of the talk that I want to emphasise today. One of them is what happens to adolescents who have an acute psychological trauma during adolescence and the other is a group of children who’ve been traumatised in childhood, how do they present in adolescence. My particular expertise is derived form my interest in bereavement and it’s traumatically bereaved adolescents particularly that we are going to focus on. I’ve been interested in the effect on children of losing a parent by death for many years and as a result of that I’ve been asked to see more and more difficult cases, it’s sort of a phenomenon in medicine that you are all familiar with, you know, can we floor her this way. And gradually we realised that we were seeing a lot of children whose parents have died as a result of one parent killing the other. And we’ve now seen in our clinic over 400 children whose been traumatised in this way.

This first slide is a picture drawn by a young adult who finally got into therapy in her early twenties following the murder of her mother by her father when she was 4. And I think it’s a very dramatic picture of the continuing effect of the trauma on this woman who had really been suffering for over twenty years when she eventually got herself into treatment. And that happens only by accident. By contrast this is a picture that was drawn by a 17 year old girl whose father killed her mother while she was in the house and she and her brother rushed to the bedroom door which was locked and managed to get it open and came in on this scene. It is horrific but it’s also very important. It says Mark and me, me is my patient. What is much more difficult to resolve is the fact that this here, in fact I find it difficult to resolve, but this here is the mother whom they found on the floor, this is her head, this is her body, that’s her arm, these are her legs. And this here is a cut throat. And all this is the results of the spurting of her arterial blood over the walls. Now, that kind of image which was imprinted on this girl’s mind was to lead to an enormous amount of mental ill health in both her and her brother. Her brother actually became psychotic at one stage, she became an alcoholic, because alcohol is one way of blotting out these sorts of traumatic images. And they both require an enormous amount of help and treatment.

Similarly there are other ways of becoming traumatically bereaved. This is the picture that some of you may recognise. It’s a picture of the plaque at Dubrovnik and it’s a quiet street, rather beautiful, these are the red roofs of all the buildings, as if you are looking on it from above. And this is the way that one young adolescent saw it after it had been shelled by, I always try to remember which way it is around, by the Serbs, that’s right, Dubrovnik is Croatia. And this is the way they saw it after it’s been bombed. This building here is actually San Franciscan library which had over 2 500 sacred books dating back to the Middle Ages, completely irreplaceable, they were all destroyed. I may be wrong, it may be 25,000 books, but it’s an awful lot of books and there is a fire-engine as you can see. This is a very well perceived picture and like the previous pictures done by the 17 year old whose father killed her mother they are absolutely imprinted on the visual memory.

I just want to give you a little background of the study that we did on the first 95 children where one parent killed the other just to set the scene for some things that I want to talk to you about. They are about equal in sex but the majority of children are under the age of 11. Many of them under the age of 5 at the time of the killing. This isn’t surprising, young children in themselves are a stress on  marriage life as many of you must know and it also a crime of young parents, as you grow older you learn to keep your temper a bit better or that’s a theory at any rate. But you can see that there are a substantial number of young adolescent in our group and I want to sort of focus on that group.

The people who are violent to their wives or often violent to their children as well and there is I think there’s underestimates amount of previous violence to the child. But you can see that the death of a parent wasn’t something that came out of the blue in many cases, it was built on previous domestic violence and it’s only in recent years that people have begun to recognise the toll that domestic violence takes on child witnesses. This is the fact that was associated with homicide, jealousy, sometimes more of a jealousy, sometimes jealousy with provocation. The threat to leave was a very important precipitating factor and there is a share of mental illness and alcohol abuse.

Now the child witnessed the killing in approximately half the cases and by witnessing we also include being in the house and hearing the shouts of the mother even if they were actually upstairs in bed and didn’t witness the actual killing and the children often come in on the scene following the incident as my 17 year old girl did.  Many of these children develop post traumatic stress disorder, so I want just take a moment to give you the DSM four definition of post traumatic stress disorder I want to pick out the particular features that occur in children and adolescents. There are two groups, there’s what I call intrusive symptoms and the avoidance symptoms and the intrusive symptoms are dreams and nightmares, that flashback, suddenly feeling or acting as if the traumatic event were occurring. And the avoidance phenomena which include the diminished interest in one or more significant activities and in adolescents this overwhelmingly is school work.

These young people start to fail at school the brother to the girl that I was telling you about who drew that picture was in the throes of his GCSE exams, he failed everything although he had been seen prior to that to be a student who was likely to gain five or six. The feelings of detachment or estrangement, the constricted affect. Then other symptoms which were not present before the trauma, particularly sleep disturbances, exaggerated startle reaction, guilt, memory impairment or trouble concentrating, of course that affects school work. The general avoidance of activities which bring traumatic reminders and intensification of symptoms by exposure to events that symbolise or resemble the traumatic event.

Now using the definition of witnessing to include being in the house and hearing and coming in on a dead body afterwards, of the children who witnessed the killing nearly all of them developed a post-traumatic stress disorder and of those who didn’t witness the killing most of them didn’t develop PTSD. A significant number of both groups went against expectation. Children who didn’t develop post traumatic stress disorder were children who had by and large an effective intervention. Children who didn’t witness but developed it were those who have experienced chronic domestic violence preceding the actual death so they were traumatised by witnessing horrific things happening to their mother, I say mother because 90% of these cases were father killing mother.

In her therapy my 17 year old made use of drawing, she was quite a talented artist in a way, and one of the things she felt that she had to do and I encouraged was to say good-bye to her mother and to tell her the things that she wanted to tell her and hadn’t been able to tell her before she died. But this image of this bloody mother persisted throughout our contact. She saw her anger in her brain as a sort of garage that has got an enormous amount of junk in it, this is all the junk in her mind and each one of these images has a particular resonance for her in relation to her family and her father in particular. You can see that prison wall and the window.

One of the important things in talking about therapeutic work with these adolescents is that they should engage in therapeutic work, one of our findings in our follow-up study of our first 95 children was how few of them actually found their way to therapists. We have seen all 95 of them, they have been referred to us, but very often because we are national clinic we see children from all over the country and although we assessed them in need of therapy they are not able to travel to us to get it. We make enormous efforts to locate and try to find help for them in their locality but very to our disappointment when we did this follow-up study we found that very few of them had actually received any therapy. There are a lot of reasons for it, most important is lack of resources generally in the country but in particular this group of children were not considered to have a very high priority by the clinics that had to prioritise the work that they did and that’s because they don’t necessarily show symptoms that are disturbing to other people.

They avoid traumatic reminders, they are often somewhat dissociated in order to try and cope with these images, they may present in ways that are not seen as psychiatric problems, they may be delinquent or develop substance abuse, generally adolescents take great care not to alert caretakers to their internal agony and this is partly because they have lost one set of parents and are very afraid of losing second set of parents if he lets them know about how awful he feels. This is sometimes because he feels some guilt over the death of a parent and of course he may in fact have been unwittingly the cause of the death. We’ve seen many children who told the father about uncle Johnny who stayed the night when you were away working and of course still has the been an affair and has been the sort of cause and effect of father’s anger. So many of these children are carrying enormous burdens which they don’t let others know about except through ways that are not always recognised as psychiatric distress. One boy witnessed his mother kill his father when he was 6, she was not given a custodial sentence and she continued to care for him. When he was 15 he was involved in a gang fight at school and he took a knife to that fight as many other young people. Somebody stumbled and fell and was yelled at to stab this boy that was on the ground and he had a flashback to the circumstances of the death of his father when he was 6 years old and I think dissociated, it was a very powerful experience and he dissociated and plunged the knife in to this man, into this boy and killed him. He got a murder rap and I was asked to see him much later on to see whether early experience might have been a mitigating circumstance. These children often present in ways other than the direct way of being affected by the death of a parent or loss a long time ago.

I wanted to talk a little bit about memory. Most of the symptoms of post traumatic stress disorder which is classified as an emotional disorder, most of the symptoms can actually be understood in biological terms and they are related to the what we understand about the neuro-physiology of memory. I don’t want to give you a lecture on memory today I want to talk about processing traumatic perceptions because it is something that we need to understand if we are going to treat these children and adolescents. Traumatic experiences becoming coded by the brain differently from non-traumatic events. Only part of the experience is processed and the over-riding need is to diminish emotional flooding. That may lead to focusing attention away from the trauma.

Excessive stress may also directly impair hippocampal functioning which mediates the focal attention needed for what’s called explicit or declarative memory. So you have a situation where only part of the scene is actually remembered and which is not properly processed through the normal memory channels which enables us, the explicit memory is memory that we can summon up at will, it’s not properly processed and therefore I visualise it as going round and round in a circuit where it can be summoned involuntarily, so what happens is that you are walking along the street and you suddenly see a red wall for example in the case of my patient and you suddenly back in that room trying to comfort your dying mother with all the emotions that were present at that time and you have a most incredible experience of flashback phenomenon and this is related to the way in which the memories are processed. These non-declarative memories are also state dependent so that you can’t actually remember them, you can’t recall them to memory unless you are actually in the same emotional state as you were at the time so that you have two things going on, and one of the reasons why some of these children appear to be unaffected by horrific things that they witnessed is because of the fact that they had to process them in a way which does not enable them to come to mind. So they appear to be very calm, very detached, they actually aren’t perhaps symptomatic because they actually don’t remember what happened.

Now you may think that that’s a very good state of mind not to be able to remember these and very often I am told, well, I don’t want her to think about it and to remember it, I want her to forget it.  That would be fine if she could really forget it, but what happens is  that it pops into the mind when you are not in the position to be able to control it and it overwhelms you and this I think is a reason why so many of these young people start to drink, to take drugs, to act out in delinquent way is because they are not coping properly with the memory that has not been properly processed.

Now, the question is, can we do anything about this. We do seem to be able to do something about it and I just want to end by talking to you about treatment. Firstly I think that it is possible to prevent the onset of post traumatic stress disorder. There was a fashion for some time which was called psychological de-briefing which was a single sessions in which you try to get everybody to let things hang out. Now that’s been shown not to be effective and indeed follow up showed that children who had less than 3 sessions of any kind of psychotherapeutic help did as badly as those who had none at all. You certainly need to have as minimum 8 to 10 sessions. It is a question of what goes on in those sessions one of the most effective treatments that has been found recently has been called eye movement desensitisation and re-processing - EMDR - this again has got a physiological basis for it and although I am not going to go into detail. The basis of the treatment is the cognitive behavioural one and it has to do with being able to help the individual to summon up parts of the traumatic experience and deal with each part individually and separately so that they are not flooded by images which produce an emotional response which they find dystonic and therefore avoid.

I thought it might be helpful if you had a short reference list which I could take you through which might be helpful. There is a working party documents which was set up by the government in this country to set up a plan for dealing with disasters, you remember we had rather a lot of them in the 80s and early 90s and this was circulated to all health authorities and directors of social services. Unfortunately the plan wasn’t put into action. You know what happens is that you have all these traumas, people get very excited about it, and then we don’t have one for a time so it all gets lost, but I recommend that as a very good plan which other people may actually take away with them. I added it to the book with others on psychological trauma developmental approach which takes on further quite a lot of the things that I’ve been talking about today. Road traffic accidents, I didn’t mention today of course it is one of the areas which people are only just beginning to take a research interest in and that’s very useful. Goodyear has looked at literature on long-term effects of stressful life events, this is a book on when father kills mother. Judith Herman in the States has written this I think brilliant book called “Trauma and Recovery, the Aftermath of Violence, from Domestic Abuse to Political Terror” and she particularly looks at the way in which rather like our disasters lead to a flurry of interest which then dissipated there’s been a flurry of interest in what has been variously called shell-shock or traumatic neurosis and finally PTSD after each war but then people start taking an interest in it after these things fade out, but I just want to remind you about how when we were celebrating the end of the Second World War fiftieth anniversary in 1995 how many people crept out of the woodwork who had been traumatised by their experiences both in the Second World War and the First World War and they were still talking about their nightmares and their post traumatic stress disorder fifty years on or later. So I’ll leave it just for a moment and say thank you very much.

Chairman - Thank you for this very difficult and very important lecture. We don’t have time for questions and will continue with the last speaker on this session. I am looking forward to hearing this it’s a pleasure to introduce Joy Trotter from the University of Teesside, she’s been researching in the past into sex abuse of children and her present work is about more general aspects of sexual development of young people, she is talking about a homophobia and mental health in young people.

Young People, Homophobia and Mental Health  Joy Trotter

I was going to be glad to be last was because I was going to be talking actually about mental health that isn’t just euphemism, I am interested in how young do stay and maintain healthy mentally particularly of what because of what they experience and what they go through in school is what I am going to talk about I think. The other reason that, well it’s surprisingly that I was going to be glad because much of the conference has been very medical model, disease model based and people been looking at symptoms and doom and gloom and awfulness and problems, problems, problems and I was going to talk about some good things really, so hope fully we all get glad by the time I finished. Just to tell you my background, I am a social worker by profession and not a medic so that sort of makes me stand out a bit in this morning session and my background as you said was actually child sexual abuse and mental illness, but now I’ve been a lecturer and researcher for 11 years I have been working around equal opportunities and more recently sexuality and  I think it’s been a much nicer job than being a social worker. So I am quite a glad person, usually.

I am only half way through this research but  one of the things I started with is what you are supposed to do I think when you do  research is read a lot. And as sexuality was a new area to me academically I read all sorts of stuff. And I found all lots of things, and I read philosophy, and sociology, and culture studies but some of things that I think were important are that I found adult sexuality has diversified and relaxed and you find that sort of stuff in the newspapers and on the television that adults can be all sorts of things now and there is new words entered our language that ten years ago we never heard of and we might not know what they are but we are familiar with words like transsexual and those of us who are from England are watching Coronation Street will be following the trails of Haley who is transsexual so we are all familiar with some new words.

However on the whole young people sexuality remains restricted and prescribed and when it is given attention it is usually around prevention and I’ve certainly heard that over and over again at this conference today, preventing young people getting pregnant, young women getting pregnant, preventing child sexual abuse, preventing them having sex really, is what I’ve been hearing. And children’s sexuality continues to be denied. Few more themes I found in the literature that in the literature that’s specifically about sexuality and there is lots of it, they must sell very well books with sex on the cover, that children don’t feature in that hardly at all except as victims or by-standers but they are not sort of participating. And another thing that I found which I thought I heard again at this conference was that people connect, often connect sexual maturity with first heterosexual experience. And some people seem to imagine, or think, or believe, or cling to the idea that children are completely sex-free or sexually innocent until a penis goes into a vagina and then they are sexually mature and then it’s sort of very sudden like that. And another thing I found, which I am not going to go into now, there is a lot of confusion who is responsible for all this.

I said that I did do quite a lot of things apart from reading and I’ll tell you about what I did do and then skip the results I think. The first thing that I did was some participant observation with a group of young women. The young women were already a group and they were some women who had excluded themselves from school having been bullied. So they were being taught in one of those units for young people that don’t go to school and I was called to do something with them. And I wanted to do something about sexuality because that’s what I am researching, they didn’t want to do that because they we weren’t interested in that, they made a rather good video about bullying at schools and it was extremely good and they did really well, but I did learn lots. They knew I was doing that as well about sexuality and about mental health from them while I was doing that, so that was the first thing I did.

The second thing I did was read lots, I got permission to go to two large secondary schools in a poor area near where I live and I read a lot of documents, I interviewed staff, not as many staff as I’d wanted to but I interviewed 11 staff so far. And lurked about in the corridors and things and looked and watched and appeared very suspicious I think. But still again I learnt lots about sexuality and about mental health in the bits I did at school I observed mental health, not mental illness.

I found in the school policies that although the school had recent strategies and policies about racism and sexism, and sexual harassment, and bullying, very active policies about bullying, which were commonly referred to and available there were no policies about heterosexism or homophobia and sexuality was not an issue requiring attention, I found it mentioned nowhere at all in school policies. In the documentation revealed I looked at the curriculum and found that sexuality was only ever I could only find it in sex education and that was in two sort of forms, either health about sex education and health and that was about preventing AIDS, HIV, preventing pregnancy and preventing abuse, very much like we’ve heard in the conference today, or the mechanics of sex education, what goes where stuff that I don’t know about. But both of those focuses leave the responsibilities firmly with the children, firmly with young people, it was about how they shouldn’t get pregnant, how they can protect themselves from strangers and weird people, and it was all about them doing it. In the interviews staff acknowledged ignorance regarding sexuality issues, they were quite up front about that, they didn’t know anything they claimed. And most of them acknowledged that homophobia was present in the school very readily told me about things that they heard every day in the corridors, in the classrooms, just in a shot that they knew there was homophobia in the school. But they all had considerable difficulty with language, none of them could say the word “lesbian” to me, one or two attempted the word “homosexual” to me but not all succeeded, but when I pressed them to tell me what it was they were hearing in the corridors and in the back of the classroom and things, I mean they had to pressed to tell me what they heard, they warily looked and sort of said, oh, all sorts of derogatory terms and things, but they managed to pronounce those quite well.

And finally from the staff interviews most interviewees assumed that all the pupils parents and staff were heterosexual, that assumption heretosexualness which is heterosexism. Some of the staff even blamed the young people for homophobia quite blatantly distanced themselves from it and the majority of staff however said the sexuality didn’t require attention, that was absolutely opposite of what they were saying, but they didn’t need to deal with it in their school.

So my conclusions, quite a lot really and my conclusions come from all the  reading as well as from the work with young women in the video group and my lurking around school. That heterosexism and homophobia are present in schools in England, or they are in the 2 that I went to and that lesbian, gay and by-sexual staff and young people are not visible. Professionals avoid sexuality issues in their work and links between homophobia and mental illness are difficult to demonstrate. That anti-gay harassment and violence is increasing in schools and that heterosexual young people are more likely to be targeted about harassment and violence than lesbian, gay and bisexual young people. That those targeted are significantly more at risk of self-harm and mental illness, however despite all this and despite school indifference to all this or to most of this most of them avoid ill health.

So the last part of my research that I am going to get into very very soon is going to be focusing on that how come there is so much homophobia, so much heterosexism and so little interest and concern from the adults around young people how do they survive, not survive how do they stay mentally healthy. And I think it’s going to be these 3 things: conforming, confronting and escaping. Many young people are conforming and they are appearing and that’s the important thing heterosexual, heterosexual young people are working at it as hard as lesbian, gay, not yet decided by all people and  working at appearing heterosexual because that’s how you get through, that’s one of the biggest strategies for getting through and staying healthy. Some are confronting, some of them are challenging homophobia and reporting harassment. I don’t think they are getting much response from the adults but the confronting is a good way to stay healthy and doing something about it. And unfortunately a few are also surviving by escaping. There is escaping psychologically or actually and the leading schools one was what my young women in my video group had done they were sort of the extremes, but left school or withdrawn from school to avoid it. So I am going to be looking in the future how this resilience manifests itself.