The Young ME Sufferers Trust www.tymestrust.org April 2004 ====== Speeches by the Lord Clement-Jones CBE and Tymes Trust Executive Director Jane Colby at the House of Lords ====== These speeches were given at the House of Lords launch of the Tymes Trust / Nisai Education Partnership on 26 April 2004. The Lord Clement-Jones CBE Patron, Tymes Trust As Patron of The Young ME Sufferers Trust, I am delighted to welcome you all here today for the launch of the new education partnership between the Trust and Nisai Education. I really am enormously pleased and proud to be to be the Patron of this excellent charity which many of us already know well as the Tymes Trust, which does such a wonderful job for children with ME under the leadership of the remarkable – and indeed the dynamic – Jane Colby! The charity is increasingly using its full title – The Young ME Sufferers Trust – so that people know exactly what its role is. What is now The Young ME Sufferers Trust began in 1989 when two young people with ME decided to share their experiences and communicate with others like themselves. They thought, quite rightly, that this would help those other youngsters to realise that they were not alone. So they started a small newsletter with a tiny circulation. They called it TYMES – to stand for The Young ME Sufferer. Who could have foreseen that years later, that small newsletter would have developed into TYMES MAGAZINE, read not only by children with ME, but by families, doctors and teachers, and even recommended by the best-selling author Shirley Conran. Those two young girls had a vision of reaching out to other children with ME. And that is the basis of the new partnership we are here to launch. Reaching out to children with ME in their homes. ME is a potentially severe neurological illness of the brain and central nervous system. A bout of ME typically lasts years – and those years of a child’s life can be years of wasted potential. Many people do not realise how severe ME can be. In the worst cases, doctors have to make sure that the child doesn’t actually have a brain tumour, and it can even mimic a stroke or cause a partial paralysis, reminiscent of the dreaded polio myelitis. It is, in fact, now known that ME is more disabling than many other chronic illnesses, so perhaps it is hardly surprising that this illness is the biggest cause today of long-term sickness absence from school. This causes great educational deprivation. Two years ago this month, I hosted a previous event like this one, at which I was pleased to present computers from Tymes Trust to children with ME to help them with their education at home. I understand that this has been of great help to them. Today we are all here to witness the start of a new partnership between The Young ME Sufferers Trust and Nisai Education. This partnership has the potential to revolutionise education for children with ME right across the country. Around 90% of the Trust’s Advice Line calls include problems with education, schools, home tutors, and other related worries. These children are very sick and they just cannot access the same type of schooling as other pupils. If they try, they become even more sick. Clearly, a radical solution is needed. Of course, solutions do not just appear overnight. With us today are people who have been working for years to make use of modern technology in order to develop “virtual education” suitable for sick children. Based in Warwickshire, they have been quietly setting up lesson programmes, finding suitable teachers and putting their plans into action. And it was when they joined forces with Nisai Education that the Virtual Classroom was born into the scheme. I’m told that this is what the children really like best. The Virtual Classroom. What is a Virtual Classroom? It means that children can be sitting in front of a computer at home, yet can still actually talk to the teacher and interact – just as they could if they were at school. They have to put up their hands first of course – and to do it they click on a Virtual Hand! I’ll leave it to the Trust’s Executive Director to explain why all this is especially significant for children with ME, and why The Young ME Sufferers Trust – which we all know affectionately as Tymes Trust – decided to become a Partner in this state of the art venture. What I will venture to say myself is this – surely the fact that the children already on this scheme have achieved a 96% GCSE pass rate at grades A-C speaks for itself. I thank you all for being present today and I hand you over now, to Jane Colby, a former head teacher and the Trust’s Executive Director. Jane Colby Executive Director, Tymes Trust Yesterday was my birthday. I had a card from one of the Trustees wishing me, tongue in cheek, a restful one! When you’re spending your birthday, and a Sunday too, working, however special the event you’re preparing for, you do occasionally wonder why you’re working when a beautiful spring day is beckoning you to relax. Well of course, here in the splendour of these surroundings, and in the presence of children recovering from ME, those thoughts quickly vanish. We all know why we’re working so hard on this project. Because now and again, a project comes along that has the potential to change children’s lives profoundly. I firmly believe that this is such a project. ME, or Chronic Fatigue Syndrome as it’s often called these days, or even ME/CFS, often arouses great passions – in doctors, in patients, in politicians, in pressure groups – and this is understandable, because where there is confusion there is often injustice. Because there is as yet no diagnostic test for this illness, and because the criteria often used for identifying it tend to be rather wide, we mix together people who may not all have the same underlying cause for their condition, so they are bound to respond differently to treatments and also in research studies. As a result, recommendations from professionals who all have differing viewpoints and who have seen different patients frequently collide. In short, ME/CFS is a classic example of “Everyone believes they’re right – so how do we agree?” Because as we all know, ME/CFS is an area where the professionals do not generally agree with one another. Sometimes they disagree very publicly. Where opinions collide, the child is caught in the middle. Professional recommendations are key to provision. They directly affect what kind of education we provide for children with this condition. So let’s look a little closer at ME/CFS. Is it a neurological disease? A disease of the brain and nervous system? Yes, because not only do all the symptoms point that way – the inability to think properly, the pain, the weakness and disability – and not only do the real experts in the field, those with the biggest patient databases going back decades, tell us that clinical practice demonstrates this – but research is continually coming up with findings that indicate viral damage in the brain. Luckily the brain is pretty good at making new pathways over time, so, for example, those with ME/CFS who lose the ability to remember words and talk properly mostly regain those skills in the end. So yes, it’s a neurological disease, and it is classified as such under the name Myalgic Encephlomyelitis, and also as Chronic Fatigue Syndrome, by the World Health Organisation – and our government recognises those names and that classification. That is a vitally important point for the education services to recognise. This illness is centred in the brain and no amount of pushing the child that little bit further, to attend school, to make more visits to a unit, or to complete their work or meet some other artificial target on which nature was not consulted, will make that effect go away. Too much effort – and that can mean a very little effort – makes these children worse. Not always immediately – there is a latent period of between 12-48 hours, sometimes even longer – and then the effect of effort kicks in after a slow deterioration during that period. There are some children who manage to go on overexerting themselves for weeks, trying to meet the demands of school, and they either end up crashing, or slowly going downhill until they become chronically disabled. Because of the similarities of many cases to polio – probably those caused by the Coxsackie B virus – this reminds us that children with polio who were forced back to school too soon had twice the rate of paralysis. So we need a system of education that, whilst not costing more than it is possible to provide, keeps the children in touch with real teachers and with other children, but one that they can access without putting too much demand on their body and their brain. When you do that through the Virtual Classroom, you find in practice that not only are results better educationally but a number of children eventually start to become stronger. Out of the two young people here today who have used the system, one has already been able to access school again and the other young guest is a prime example of how to come right through the scheme with flying colours, despite illness. This really is a win-win situation. We win in terms of education but we also win in terms of health. We’ve established that ME/CFS is a neurological condition. So can it also be a psychological condition? Can any illness be designated as two conditions at the same time? Not according to the World Health Organisation. It was confusion over that which led to a row recently, when it was categorised in two places in some very important documents, leading to a huge muddle that is still being unscrambled. In the meantime, many people, including doctors and teachers, got the impression that ME/CFS was a psychological illness and this has led to huge misunderstandings about what type of education is needed for the children. It’s only common sense that any chronic illness which causes pain and disability, often quite long-term, can potentially affect a person’s outlook and their ability to cope. And any disease that is centred in the brain and disturbs the balance of hormones will from time to time produce some odd effects, like panic attacks or bouts of distress – I would call it distress rather than depression, because clinical depression shows a different hormonal pattern from ME/CFS in the brain. So technically, those who argue that there can be psychological aspects to consider in some cases are not strictly wrong. What is wrong is the conclusion that is often drawn from it – that children with ME need to get back to school at the earliest possible moment, to minimise the risk of sinking into unhelpful illness behaviour patterns. This myth still persists despite all the evidence to the contrary and it is one of the main reasons why children with ME often find themselves denied education at home. That and the fact that the chronic neurological nature of the illness is not known about as widely as it should be. I am continually amazed at how incredibly normal most of these children are despite their illness, and how bravely and resiliently they face life. Most seem, over time, to become practical and realistic about what they can and can’t manage. But most also go through a stage where, like any other normal person, they try to pick up where they left off every time they feel a bit better. And that can lead to yet another relapse. Living within the boundaries of an illness does not mean that those boundaries are fixed forever. The ME expert Dr Darrel Ho-Yen often points out that the trick with ME is to live within its boundaries, because then the boundaries expand. And in my own experience, this is indeed true. And if anyone here is a golfer, I’ll prove it to you on the golf course one day. Squash may be out, but golf is in. And there are still improvements in my level of strength, even after almost 20 years of slowly becoming stronger and fitter since the dreadful bout of ME that put me in a wheelchair and that led me to leave teaching to rebuild my health. Funny how the wheel can come full circle. Here I am again, in the thick of educational innovation. And it is very exciting. I even used the Virtual Classroom myself, to give a talk at the Nisai conference via the internet. And yes, the children are right. It is fun. If you haven’t had a go, you must do it. You’ll be sold straight away. At least, I hope you will. Because when a sick child is having fun, they’re learning. And they’re not learning, “I’m a failure, I can’t manage my work, I can’t get to school so I’m falling behind,” they’re learning, “I can do it, I am worth something, I am a success.” I had just got to this point in writing my speech when Shirley Conran rang me up. She had been thinking about today and about the children, and she said, “You know, when children go back to school, they should long to go back, not dread it.” And of course she is right. When we drag a sick child into school too soon, and too often, they soon come to associate school itself with feeling ill and with failing to make the grade. That is bad. And it’s our own fault, not theirs. In the more severe stages of this illness, many children can’t manage any type of education at all, and parents naturally put health first. But as soon as something can be managed, it must be something appropriate, something tailored to their particular stage of the illness and their particular abilities and stage of learning. When I speak on the subject of ME I don’t normally bring God into it – in the modern scientific world it would cause, at the very least, raised eyebrows. But today we are privileged to have Ursula Franklin with us, who was for many years married to the late, great paediatrician Dr Alan Franklin. Like Ursula, Alan was sincerely and devoutly religious – and surely there has never been a more compassionate doctor. He knew that when children are in need, one cannot just stand by and indeed, one may have to go that extra mile, above and beyond the call of duty. As he often did. These are conventional phrases but Alan was far from conventional. He dared to say things like: “If the child doesn’t fit the theory then the theory is wrong.” He was also a shining example of the advice given in a little book called Springs of Humor – “Ask God’s blessing on your work – but do not also ask him to do it.” We have many fond memories at the Trust of working with Alan over the years and we have produced a Book of Remembrance for his family with tributes from parents, families, organisations and individuals right across the country. We’ve brought it with us to give to Ursula today and I’m going to ask our Trustee Margaret Ross, who was responsible for producing the book, if she would please present it to Ursula. [The Book of Remembrance was presented to Ursula, who gave a short address in which she thanked us for inviting her and said how important it had been to her and to Alan to be able to help people with ME. It was, she explained, important to her to attend in order to show continuing support. She accepted the Book with thanks.] In losing Alan Franklin, we lost a true champion of children, but I firmly believe that new champions will arise. They will not replace Alan because every human being is unique and (I hope the English teachers among you will forgive me for this) Alan was especially unique. But they will arise and they will come from the ranks of those special doctors who, even while they struggle with huge workloads, strive to put the needs of children before the demands of the system. Doctors often find themselves prescribing education, which the Royal College of Paediatrics and Child Health does not regard as their job, and indeed, it isn’t. But in practice, General Practioners and Consultants are often asked to do this. To help them, Dr Nigel Hunt, the Associate Director of GP Postgraduate Education at the Eastern Deanery who worked on the Chief Medical Officer’s Working Group with me, has helped us to produce the GPs Good Practice Guide to Education for Children with ME. It’s a good start and it of course recommends the scheme we are here to launch today. I would at this point like to commend to you the many dedicated people who make The Young ME Sufferers Trust what it is. All of them work for no financial reward. We could do little without their commitment. Some time ago we invited two of the Advice Line Team here to represent this aspect of our work. One is Barrie, who also represents his daughter Jo-Anna, a young woman with ME and our newest member of the Team. The other is Gillian, mother of a child with ME. Her immediate reaction on being given the invitation was “Yes, I’d love to come – oh, but I can’t, because it’s a Monday.” Monday is her tour of duty on the Advice Line. Now that’s what I call dedication. Needless to say, others have covered for her so that she could attend. We are also pleased to have the support of the Queen’s cousin, Lady Elizabeth Anson, who has herself suffered with ME. Lady Elizabeth is Patron of the Tymes Trust Friends, which is very new. In her introductory letter, she writes: “To be a child with ME must be even worse than the struggle that I have been through myself.” Details of how you may accept her invitation to become a Friend are in her letter, copies of which you will find on the table. Naturally, we very much hope that some of you will take the opportunity. Over the weekend, we received an email from a parent which I decided to read to you today. It makes the point that practical help is what makes the real difference to families. There is almost always something that can be done about a problem if one wills it enough. This mother writes: I wish you every luck for Monday and will be with you in thought that everything goes really well and that you have a resounding success. Please let us know how it goes because we are very interested; the service offered by the Tymes Trust is exceptional and we feel that more organisations for children are needed in all areas of health and disability who are not just there to offer leaflets but are like Tymes Trust and actually believe in helping young people. You have our greatest respect and admiration for the work you put in for young people and for your generosity when offering your support. Much love for Monday. Sadly, this mother’s family is one of those who has been through the appalling trauma of being suspected of having harmed or neglected her child, because he has ME. This is happening too frequently and this case has been driven, like so many others, by an educational worker who has not been trained in the needs of children with ME. The partnership between The Young ME Sufferers Trust and Nisai Education will, we hope, not only help the children whose Local Education Authorities have the vision and commitment to sign up to the scheme, but will also eventually help teachers too, as the partnership plans to train them in the needs of children with ME. To find out the nitty gritty details of, as the saying goes, “How the watch works” (now that I have explained why we need a watch at all!) please do pick up an information pack and talk to David Teece from the Nisai-Iris Education Partnership in Warwickshire. David will say a few words shortly and will introduce to you the teachers – and also the two young people with ME – who are here with us today. They have greatly benefited from the scheme and have now had the fun of meeting their “virtual teachers” for the first time. You can also ask anyone with a Nisai Education label, including mastermind Dhruv Patel – can you stand up please Drhuv? You’ll also find plenty of leaflets, information about children with ME and copies of Tymes Magazine on the display tables. Please do avail yourselves of these. If you need to, get back to one of us later on, after this event. Of course, I know that many of you here are already among the converted. Anyone from a Local Education Authority who has not yet joined us, I urge you, please do so. And please pass on the message to all your colleagues in neighbouring authorities. We want this system available right throughout the UK, for every child with ME who could benefit. It will not cost the earth. It is an efficient use of funds. It also meets government aims for children with Special Educational Needs. For the child with ME, indeed for other sick children, this scheme can bring real achievement and the joy of achievement even through the pain of illness. Thank you all for being here today. ====== Copyright (c) 2004 The Young ME Sufferers Trust