Tymes Trust Alert 2015-04 Message from Jane 10 November 2015 ====== YOUNG HEARTS DAY COMING UP! Sunday 29th November Plus TYMES TRUST ADVICE LINE NEWS ====== YOUNG HEARTS DAY COMING UP! Sunday 29th November Would your child with ME like a Young Hearts gift and card? Last year we sent out lots of Young Hearts Day gifts and this year we're doing the same. Here's a reminder, with a lovely picture of one of our Young Officers. http://www.tymestrust.org/pdfs/tymestidings2014.pdf I don't usually clutter up these Alerts with personal news, but if you've been wondering why you haven't received one for a while, my own year has so far been affected by health issues (something with which we are all only too familiar!) so I have rescheduled letters and publications for members, and am now planning for Young Hearts Day and our end of year Tymes Tidings. The sooner you send us your request for a Young Hearts Gift, the sooner it will be dropping through your letter box... On Young Hearts Day itself, we shall be lighting a candle as usual and posting a picture of it on Twitter and also on our Facebook page, which you can access even if you're not on Facebook. www.facebook.com/tymestrust Young Hearts Day is an established Tymes Trust tradition to remember all young people with ME everywhere. Please join us, light your own candle, and post it online somewhere to spread awareness. TYMES TRUST ADVICE LINE NEWS Our Advice Line has been trialling a new system this year. The background to this change was that our small dedicated group of advisers who all work pro bono (as do we all!) had increasingly been finding themselves waiting by the phone during Advice Line hours with few calls coming in, and then needing to make "out of hours" callbacks at other times as well, to anyone who sent in an email for advice or who had left a message. So I recorded a personal message for our voicemail system inviting all callers to leave a message telling us why they are calling and what information they need, and we now try to arrange callbacks for everyone, at times when we know they will be standing by. This has the advantage for callers that we can get the necessary information ready, you get a call at a convenient time and do not incur call charges for the discussion, and we can make best use of our kind volunteers. It would be helpful if, when you contact us, you can give us a choice of times when you will be available to take our call. The system has been working well, but sometimes Debbie and the Team try many times to get through, but no-one picks up, perhaps because the caller display reads "number withheld". Giving us times when you will be expecting our call should help with that, as you will not be worried that it is yet another annoying spam call! AND - SCHOOLS AGAIN! Over 90% of calls to the Tymes Trust Advice Line concern problems with schools. The Trust has been working hard this year to improve our members' individual schools' understanding of ME, and the reasons why children with ME need time at home, on a part time timetable, perhaps learning with a home tutor or through virtual education, or even not studying while they are severely ill. Unfortunately there have been some recent newspaper headlines that you will doubtless have seen, suggesting that ME is not a chronic illness. Clearly, that cannot help in your dealings with GPs and schools, but members of the Trust will know that we can advise and assist you with that, so that you know your rights and can challenge inaccurate beliefs. I would also add that should you have any suspicion that people do not believe you about your child's illness and/or are raising concerns about your parenting, do contact us immediately. These things can move very swiftly and it's best to be prepared. Schools are often the source of such allegations. To date, none of the allegations about parents whose children have ME and with which we have advised have been proven correct. With all best wishes - looking forward to sending out your Young Hearts gifts! 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, or if you have received this Alert in error, please 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) 2015 The Young ME Sufferers Trust