Tymes Trust Alert 2012-07 Message from Jane 19 August 2012 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== SEPT 1ST: HOW TO MANAGE YOUR ME With reference to the work of Dr Elizabeth Dowsett ====== My next public talk will be on Saturday 1st September at Kingsland Church (above Aldi) London Rd Colchester Essex CO3 9DW from 1.45pm-4.00pm. The event is being organised by the Colchester ME Group and anyone who is able to attend will be welcome. Do come and meet me if you can. With the start of the new school year, the usual pressures to attend begin all over again. I am already receiving emails of concern about this. In our experience, the biggest cause of relapse in school pupils and students is trying to conform with demands to attend more than the young person can manage. In many cases, no sooner is a manageable level attained than there is pressure to increase it, often with disastrous results. In practice, this is the educational equivalent of graded exercise therapy (GET). It may well be even more demanding. Parents who have found that GET is not helpful for their child and have declined further such treatment may nevertheless feel intimidated into allowing their child to be forced into an equivalent demand on their body, and also on their brain, since academic work is exhausting. When I talk to schools and home tuition providers about this, I often find that many feel pressurized themselves into insisting on quite rapid graded attendance, and some have even been visited by medical professionals promoting this approach. Schools need to remember that they have a legal duty to provide suitable education in accordance with a pupil's present needs. They also have a legal duty of care; it may take a long time for a young person with ME to be strong enough to increase attendance. There are many ways to deliver education these days. Dr Dowsett had a lot to say about how to manage ME, both adults and children. She was a great one for resisting any unsuitable pressure to conform and strongly believed in making individual decisions and using one's own judgement. Her views were based on a profound understanding of the illness, coupled with her personal experience of so many patients over many years. I look forward to meeting any of you who can attend on the day, and as usual, our Advice Line Team is happy to help. All best 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