TYMES TRUST ALERT 01 November 2009 Jane Colby FRSA Executive Director The Young ME Sufferers Trust www.tymestrust.org ====== To subscribe to this mailing list, visit www.tymestrust.org. ====== MINI-VISION 2009-2 - YOUNG HEARTS DAY 29 NOVEMBER Your contributions displayed at the House of Lords ====== As Young Hearts Day approaches once more, we are collecting contributions from our young members to be displayed at the House of Lords on ME Awareness Day 2010. We have included a special form for this in Mini-Vision 2009-2. The printed version of Mini-Vision was dropping on doormats a few weeks ago, before the postal disruption. You can now find it on our website in full colour. http://www.tymestrust.org/pdfs/vision2009-2.pdf Chair Keith Harley writes: 'I am extremely concerned that we are hearing from parents about adverse reactions to fashionable graded activity programmes. This style of treatment for classic ME was all the rage some years ago but now it's back with a vengeance, since NICE endorsed it. We urgently need to hear from you, in confidence of course, if you have been similarly affected. Write to me personally if you wish.' In a special insert to Mini-Vision, Trustee Margaret Ross writes: 'In recognition of Young Hearts Day we would like our members to present, in the frame provided, their thoughts and feelings about the effect that ME has had on their lives. You can send in a picture, a poem, a photograph, news of an achievement, a difficulty overcome or a wish to inspire other sufferers.' Even if you are not a member or a Partner Group and would like to send us a contribution, perhaps in the form of a message of support for the children, these will be more then welcome. You can download Margaret's invitation and 2-page leaflet with the frame for presenting your contribution. http://www.tymestrust.org/pdfs/vision2009-2insert.pdf Also in Mini-Vision, we feature a sketch by our Young Artist Chloe Halstead, and the words of Shannen Dabson, our Young Advocate. Shannen's father sent us a beautiful photo of her at the Royal society of Medicine where she gave a speech. We also recognise Elizabeth Bell who has become our Competition Champion. The Trust of course invites everyone to take a moment on 29 November to remember all young people with ME, wherever they may be. Many are very severely ill. You might like to commemorate the day by lighting a candle, or by visiting our website and reading the 'Experiences' section of our Publications Page. It's a bitter-sweet experience, reading the stories in 'Mummies aren't supposed to cry'. If you didn't read it before, do share these stories with us. We'll be in touch again soon. Jane ====== READ PREVIOUS ALERTS AND REGISTER FOR FUTURE ONES AT www.tymestrust.org ====== DO YOU KNOW ANYONE WHO WOULD LIKE TO RECEIVE OUR ALERTS? ====== 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 member of the National Association of Educational Inspectors, Advisers and Consultants (now ASPECT), a life member of the National Association of Head Teachers and a Fellow of the Royal Society of Arts. Copyright (c) 2009 The Young ME Sufferers Trust