Tymes Trust Alert 2011-09 Message from Jane 29 November 2011 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== YOUNG HEARTS DAY 29 NOVEMBER School wins Young Hearts Award ====== Royal Wootton Bassett School has been given the Tymes Trust Young Hearts Award for 2011. They were nominated by one of our families. It was a lovely surprise for the school. A photoshoot and publicity are planned for a later date and we're all looking forward to reading more about how the school has helped. I ran a school myself for nine years, so I know it's not easy to make special provision for individual children. But not only is it what the education service is legally supposed to do, it's simple humanity to protect the health of a sick child, ensuring that what they can achieve, they do achieve, despite illness. If that means providing education in the home, or virtual education, or limited attendance, then that's what should happen. It is heartening to learn of supportive schools and I would love to hear more about the good ones. PRESS RELEASE : ME 'FATIGUE' DISASTER To mark Young Hearts Day we have now widened our poster campaign to the national press. Today, a press release went to the broadsheets and tabloids. We plan to continue this campaign into other areas of the press and media, working with any of our members and supporters who would like to join in. Would you like a copy of the press release to send to your local newspaper? Just let me know. We haven't published it online yet, because newspapers like to know that they were the first to receive the press release. Here's how it opens: --- ME - IT'S JUST FATIGUE, RIGHT? WRONG Campaign poster features a severely ill child: http://www.tymestrust.org/pdfs/ttwrongposter.pdf "The medical establishment's use of the term Chronic Fatigue Syndrome in place of ME has been a disaster for children," says Jane Colby, Executive Director of The Young ME Sufferers Trust. "People think it's just tiredness," says Jane. "So when they are continually absent from school, the parents are blamed, or the child is labelled with a psychiatric condition. This is causing untold misery for families." [...] --- There's a lot of meat in this Press Release, and I make quite clear that when children with ME get over relapses they don't always look ill, but will relapse again if too much is demanded. YOUNG HEARTS Once again, Mark dressed our website with hearts to welcome (and possibly surprise!) newcomers on Young Hearts Day. Take a peek: www.tymestrust.org I'll be writing again soon. 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 ====== 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) 2011 The Young ME Sufferers Trust