Tymes Trust Alert 2014-02 Message from Jane 17 April 2014 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== OUR 25th ANNIVERSARY! Also: New: Teacher Information on ME ====== You heard it here first! The year 2014 is the Trust's 25th Anniversary. We were going to announce it on the actual day, June 1st, but so many of you have been phoning in to ask about our plans that we decided to make the announcement now, in good time for ME Awareness Day. We have beautiful 25th anniversary stickers for you to buy and show your support. You can see them here http://www.tymestrust.org/img/sticker-tt25.gif If you'd like some, please let me know now, then send in a donation or use our website donations form. Don't forget to tell us how many you need, and where you'd like them sent. But please do order early so we can be sure to get enough for everyone. You can stick them on pencil cases and notebooks, on letters and cards, you can even wear them on ME Awareness Day - or stick them on unsuspecting visitors! Stick them on little cards for community notice boards, colour and decorate the card. Photograph your creations and email them to me. Best photos win prizes! AND NOW FOR SOMETHING COMPLETELY SERIOUS Behind the scenes we have been working on some new publications for you to use. Over the coming weeks we shall be releasing these. Here is the first. New: TEACHER INFORMATION ON ME http://www.tymestrust.org/pdfs/teacherinfo2.pdf All the most important information, compressed into just two pages and updated for 2014. Now includes information from the NICE (National Institute for Health and Care Excellence) guideline to the medical profession on the education of pupils with ME. NICE's educational recommendations reflect the advice we gave them. HAVE YOU HAD DIFFICULTY WITH YOUR SCHOOL? We have been asked by a government minister about family experiences of school/Local Authority provision for children with ME. Our Advice Line Team, many of whom you will have spoken to, are taking the lead on this. Some of you may already have sent us your own stories. To find out how to contribute, please send us your name and contact details via the website Contact Us form here http://www.tymestrust.org/contactus.htm. In the message box just write: 'Schools Report' and we'll let you have details of how to submit your experiences to us. It is very important that your concerns are heard by the government, whether or not you wish to be identified in the final Report. COUNTESS OF MAR'S FORWARD-ME GROUP The minutes of the latest Forward-ME Group meeting in the House of Lords has a record of the Trust's views about the SMILE trial of the Lightning Process on children, as expressed to the meeting: http://www.forward-me.org.uk/12th%20February%202014.htm In attendance as Guest Speaker was Edward Timpson MP, Parliamentary Under Secretary of State for Children and Families. You will see in paragraph 2.2 that the Minister responds to my questions to gain an assurance that children diagnosed with ME/CFS should be considered as needing home tuition. ME AWARENESS DAY Q&A - EVERYONE INCLUDED On ME Awareness Day, Monday 12th May, we're holding another virtual event so that all can take part, even if they are confined to their bed. As before, this will be a Twitter Q&A, but if you're not on Twitter you can still join in. Just send me short questions in advance. I will tweet my answers on the day, so everyone will be able to read them. Anyone not on Twitter can go to www.tymestrust.org, click on the link to @JaneCColby near the top of the home page and see my tweets in real time. You don't have to sit at a computer, you can use your smartphone or tablet. Let's all meet up on the day. All good 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