Tymes Trust Alert 2014-04 Message from Jane 01 June 2014 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== GOOD PRACTICE GUIDE TO EDUCATION FOR CHILDREN WITH ME and JUNE 5TH HOUSE OF LORDS PRESENTATIONS ====== GOOD PRACTICE GUIDE TO EDUCATION FOR CHILDREN WITH ME If you're a member of Tymes Trust, we have posted you a copy of our new education booklet, released for our June 1st anniversary. A Good Practice Guide to Education for Children with ME for GPs, Schools and Families is also available online: http://www.tymestrust.org/pdfs/gpguidev2.pdf Please post a link to this flagship Tymes Trust document on social media such as Facebook and Twitter, and on ME Group websites. Email it around to those whom you feel should read it. GP Dr Nigel Hunt writes: 'One of my young patients was a member of Tymes Trust for many years. At one time she was severely ill.' He has for years talked of the importance of the professions working together 'to maximise the potential for young people with ME' and of his work with me. We are always willing to talk with members' GPs and this can prove very helpful to all concerned. Children and families have rights to suitable education, but without medical backing they have difficulty in convincing schools that serious modifications to education are *necessary* to protect their health and recovery, and to comply with education law. We know of many tragic and severe relapses due to the misguided drive to put children with ME into classrooms before they are well enough. In our experience, the professionals driving such unsuitable educational methods are often based in hospitals. Whilst they may not be trained educational professionals, surely they should know better when it comes to the child's health. The GP is the doctor closest and most accessible to the family. One student writes: 'Our GP was always there for us. It was he who opened the education doors.' This new document is written in easily understandable terms for families and schools, but also contains relevant medical information and references for the GP. It includes key information from government statutory guidelines on education for sick children, and helpful quotes from NICE. You can help to spread this vital information around. Order a set of three printed copies for £3.85 including post and packing. Send a cheque or pay online at www.tymestrust.org and email us with contact details. Give a copy to your school, one to your GP, and another to any professional of your choice. JUNE 5TH HOUSE OF LORDS PRESENTATIONS On June 5th, Lord Clement-Jones CBE is hosting another Tymes Trust event in the House of Lords. At this event we will be launching a new Tymes Trust initiative. You will be able to contribute to this initiative, and I will be sending out another Alert after the event, to let you know how. On the day, awards will be presented to young people with ME. These will recognise their hard work and achievement using interactive virtual education courses provided by Nisai Learning, with whom we work. More on that later, with photos! STRIPEYSOCKS BLOG If you follow me on Twitter, you will have seen the link to my 22nd May blogpost 'Schools Swept by ME Plague'. It reveals the reactions of the Royal Colleges and others after the Dowsett/Colby study made the Guardian front page, and shows just why we are still having to counter the arguments of those who didn't get it then, and still don't seem to get it now! www.methenewplague.net/blog/2014/05/22 With all best wishes Jane Jane Colby FRSA 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) 2014 The Young ME Sufferers Trust