Tymes Trust Alert 2012-04 Message from Jane 05 May 2012 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== PLEASE DON'T WAKE ME UP and: Banned from sleeping ====== PLEASE DON'T WAKE ME UP It is very concerning that young people with ME are frequently banned from taking daytime naps, when their brains have at last managed to sleep. Inspired by the many calls for support and help we are receiving about this issue, our third campaigning poster states that The Young ME Sufferers Trust endorses daytime naps. See it here: http://www.tymestrust.org/pdfs/ttdontposter.pdf BANNED FROM SLEEPING On the reverse of the poster I quote consultant microbiologist Dr Elizabeth Dowsett, now retired, who ensured that her ME patients understood why their sleeping patterns were often disturbed. She explained that it was due to disturbance of the hypothalamus gland in the brain. She talked of 'living within the rhythm of the brain' as it works to heal itself. That means following the brain's signals rather than fighting them. Our young members on the poster exemplify the many who find naps restorative rather than the reverse. They make clear how desperately upsetting rigid sleep instructions can be. Indeed, the term 'sleep hygiene' is in my view degrading, as though a person who can't sleep at the prescribed times is somehow dirty. Read Banned from Sleeping here: http://www.tymestrust.org/pdfs/ttbannedfromsleeping.pdf At the moment, printed copies of poster leaflets still cost just £3.35 for a pack of 10 inc p&p. You can display the poster or use it as an information leaflet. It can be folded either way - it arrives image side out for impact, or you can fold it the other way if you want to draw attention to the information. A new issue of Russell's Report has also been published, featuring a simple photographic competition for young people with ME, and giving more news of the Trust's work and campaigns. See both sections here: http://www.tymestrust.org/pdfs/russellsreport2012-1.pdf AND FINALLY - DANCING BEARS! Lovely new Dancing Bear stickers for anyone who'd like to support the Trust. Just make a donation and let us know how many you'd like. See them here: http://bit.ly/tt-support Please forward this message to anyone you think would like to know. All good wishes Jane Jane Colby FRSA Former Head Teacher 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) 2012 The Young ME Sufferers Trust