Tymes Trust Alert 2012-03 Message from Jane 19 March 2012 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== DO TREATMENTS FOR ME/CFS WORK? www.youtube.com/watch?v=XLnxv_R80KM ====== Last Spring I was speaker at the 2011 conference of our Partner Group in Shropshire. Just as our Advice Line aims to empower callers to make their own decisions, I set out to empower the audience - and also to entertain them, of course. I hope you enjoy watching. “Let's do that good old university thing and define our terms," I begin. "What constitutes treatment? … What are we treating? … What do we mean by 'work'? … You can see it's actually a very complex question.” I discuss our first poster: 'Stop Damaging Exercise Treatment for Children with ME' and I emphasise choice: “It is your choice, what you try and what you don't. Entirely your own choice. And in a family, it's the parents' choice, talking to the child. It's not the doctor's choice.” Describing my extensive experience of working with doctors, I point out: “It's not really doctors versus patients, is it? It's those doctors, versus those doctors, with patients trapped in the middle.” I mention enforced treatment, quoting Dr Nigel Speight: “There is no form of treatment for ME/CFS of such efficacy that it could ever justify a coercive approach.” To test the theory of Graded Exercise Therapy I demonstrate my invention: Graded Growing Therapy, a practical experiment with an adult assistant masquerading as a 6 year-old, causing such hilarity that the camera falls off its mounting. This leads, however, to a serious conclusion. I quote Dr Alan Franklin: “If the child doesn't fit the theory then the theory is wrong”. After this I discuss various potential effects of different treatments. I relate the controversy over the use of rest, cognitive behavioural therapy and graded exercise/activity therapy to the natural stages of the illness, showing why such controversy has arisen. Comparing the stages of the illness with recovery from a wound, I show that the stage at which a treatment is used influences whether or not it may be unsuitable. “That's why there's so much argument.” I describe my own experience: “I thought, if I want to do sport ever again, it's got to be something where the ball won't move until I tell it to.” That provokes a gale of laughter. But “it wasn't until I was ready.” I continue: “There is something else I haven't mentioned. And it's something that's done to children. Is education treatment? ... We are now seeing paediatricians treating attendance at school as if it were part of a Graded Activity Programme. I am scandalised by that.” I discuss a child's legal right to be educated in the best way for them: “If all you needed was bums on seats, then all you would have to do if you wanted to go to university is say, 'There's my attendance record.' Clearly, it's pointless.” “As a former headteacher myself, I know that children come in all shapes and sizes and abilities and we should celebrate that. And if the child is not well enough to do well and achieve anything at school, because the child is too ill, then why is the child in school?" I end by discussing how not to be taken in and how to consider what category a treatment falls into. Is it potentially safe? What does it cost? Is testimony trustworthy? "Never suspend your own judgement," I conclude. Obviously this is only a flavour of the talk and I hope you enjoy watching it all. All good wishes Jane Jane Colby FRSA Former Head Teacher Executive Director The Young ME Sufferers Trust PO Box 4347, Stock, Essex, CM4 9TE www.tymestrust.org Tel: 0845 003 9002 Holder of The Queen's Award for Voluntary Service: The MBE for Volunteer Groups ====== READ ALL PREVIOUS ALERTS AND SUBSCRIBE TO MY LIST AT www.tymestrust.org To unsubscribe, send an email via the website Contact Us form. ====== You are welcome to redistribute or reprint this email without seeking our permission provided: 1) you do not abbreviate, add to, or change the text in any way; 2) the authorship information is retained; and 3) www.tymestrust.org is credited as the source. Jane Colby is Executive Director of The Young ME Sufferers Trust. She was a Headteacher for nine years, a member of the government Chief Medical Officer's Working Group on CFS/ME and co-authored ME/CFS In UK Schools, the largest epidemiological study of ME to date. She is a life member of the National Association of Head Teachers and a Fellow of the Royal Society of Arts. Copyright (c) 2012 The Young ME Sufferers Trust