Tymes Trust Alert 2014-09 Message from Jane 28 November 2014 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== YOUNG HEARTS DAY 29 NOVEMBER *Gifts for young people *Young Hearts Award Certificates *New Project : Parent Perspectives ====== YOUNG HEARTS DAY GIFTS FOR YOUNG PEOPLE Goodness, it's that time of year already! To mark Tymes Trust's Young Hearts Day 2014, we will once again be lighting a candle, and will post a photo on Facebook and Twitter. You may like to do the same. This year we have sent out surprise gifts to some of our young members whom we know are going through a tough time. If you would like a gift for your own child, please let us know by sending their details on the Contact Us form at www.tymestrust.org You can see some of the gifts here: www.facebook.com/tymestrust This is a public page so you can view it whether or not you are a member of Facebook. You can also check in regularly for Tymes Trust's news. For those who are new to this tradition, the tragic story of why we chose 29th November as Young Hearts Day - our day to remember young people with ME everywhere - is also there. You can also follow me on Twitter @JaneCColby and follow the Trust @tymestrust. If you aren't a member of Twitter, you can see my latest tweets at www.tymestrust.org. YOUNG HEARTS AWARD CERTIFICATES We'd also like to know about doctors, teachers and others who have been kind, helpful and supportive to you. Young Hearts Day is a good time to recognise these special people. You can nominate one of them for a Tymes Trust Young Hearts Award Certificate; members of the Trust can have one certificate free of charge. Send us the name of the person, and we will post you a certificate. You can write to us, or use the Contact Us form at www.tymestrust.org. NEW PROJECT : PARENT PERSPECTIVES As you know, 2014 is the Trust's 25th Anniversary year. We are working to the theme FIGHTING INJUSTICE. We have chosen Young Hearts Day to launch our final new project of the year; it will carry on through the early part of next year and we plan to report on it for ME Awareness Day 2015. We would like to ask you whether, from your perspective as a parent, you feel you have experienced injustice in the way your son or daughter has been treated. It seems to be a harsh reality that children and young people with ME are still experiencing discrimination. If our Advice Line Calls are representative, we realise that your accounts may well involve the way the young person has been spoken to. A few years ago, we reported briefly on some examples of this, and Tymes Trust Patron Shirley Conran contacted us in concern; she, like us, felt these discriminatory comments could only be described as 'cruel'. As well as attitudes, we need to hear about any practical denial of rights, for example: the children's right to education in the home whilst not well enough to access education at school; their right to take a public examination in the home if unable to attend an exam centre; their right to have their disabilities taken account of when taking the exam. Sometimes injustices happen because of misunderstandings about the illness. It is important that we are made aware of these matters, whether or not you feel you need advice on how to handle them. Having such information helps when we campaign for improvements in the way that young people with ME are treated. Again, if our Advice Line calls are representative, you may feel you have encountered injustice in other ways, perhaps in a medical setting. And of course, you may have found yourself accused or suspected of neglect or abuse; the Trust is now up to 136 such cases where we have been asked for advice, and you will see from my 'False Allegations' paper, there are many misunderstandings that can lead to unjust allegations: http://www.tymestrust.org/pdfs/falseallegations.pdf It would be helpful if you could number your examples separately, rather than running them all together. If you are emailing us, please use the Contact Us form at www.tymestrust.org. You can also write to us by post. Naturally, your information will be kept confidential. Please don't feel you have to write a long account. A short summary of each example is fine for our purposes. We will contact you if we have further questions. Anyone can submit information to us, whether they have joined the Trust or not. The important thing is, if you want to be sure we include your example in our records for this project, to let us have the bare bones of it, whether or not you have consulted our Advice Line already. If your child wants to include a comment, by all means include it with yours. Now, I'm off to get our Young Hearts candle ready, and I'm hoping to hear soon about the lovely people who have been shining examples of understanding and support for you. 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