TYMES TRUST ALERT 17 December 2010 ====== CHRISTMAS VISION AND THE BRIEF QUESTIONNAIRE And a reminder that we need your spare cards! ====== Recently the press warned everyone that our Christmas presents may not reach us due to the winter weather. At least you won't have to wait for your Christmas VISION, which Mark has uploaded to our website in full colour for you to enjoy. (Royal Mail can't promise when the printed ones will get through to you though - whose will arrive first? Email us and let us know...) So, if you're snowed in this weekend, here's where to go: www.tymestrust.org/tymesmagazine.htm Before I tell you what's in VISION, here's a little reminder that the signed Christmas card you'll receive if you're a member (my felt pen's almost as worn out as my hand) was almost certainly donated. We do sometimes find incredible bargains and buy some, but the vast majority come from you - our members - to give pleasure to others. So please send us any spare cards you have left over (we don't need the envelopes so that will save you postage) and we can use them next year. It pays to look ahead... In this Christmas VISION we have fireside activities that all can enjoy - colouring and missing words puzzles, with plenty of prizes and gifts, to balance the more serious stuff - and there's plenty of that too. Parents, please take a moment to bring the various activities to your child's notice. If they're not well enough to do things on their own, we don't mind if you help... Here's an overview of the contents. VISION: The Trust takes a stand against injustice (Chair's letter) "I have been personally outraged at two unwelcome developments this year against which the Trust has stood out. One of these has been in education, where children with ME continue to be discriminated against..." Dr Nigel Speight on Treatment : Interview by Jane Colby Jane: There's a myth going round that you only recover from this illness if you're treated. Clearly that's rubbish. Nigel: I think the belief in 'treatment' is currently the single biggest problem. [...] Whether it's CBT or graded exercise, pacing, colouring things in, whatever it is, they seem to believe in it. Doctors who believe in their treatment are like First World War generals who believe in their plan. Colour Susie's Cosy Fireside : Claim your Magic Pen set! Poetry Missing Rhymes : Win a personalised baby animals 2011 calendar!! Our Biomedical Research : Professor Jill Belch and Jane Colby interviewed on BBC Radio Jill: Finding a physical abnormality reassures us that this is a genuine physical illness... The data are also consistent with a reactivating or persistent viral infection. Presenter: So do you think then that the attitude of people, 'Oh just go to school; it's just a cold; you'll get over it', which is quite common these days, is just completely wrong? Jane: It is completely wrong. This is not a matter of thinking your way out of it. No amount of psychological treatment can get rid of a virus, now can it? NICE Guidance : Our evidence to NICE, showing the serious need for a review of its 2007 guidance. We explained to NICE: There are two new research papers that provide new evidence [...] The first, by Gwen Kennedy and others, was co-funded by The Young ME Sufferers Trust and ME Research UK. This could have great relevance for graded exercise therapy and could well explain why patients commonly report being made worse by exercise during their long recovery process. There is plenty of evidence from patients to show that those who are not treated with graded exercise make good recoveries over time, as in any other viral illness for which there is as yet no antiviral treatment. The second, by DP Sampson, analyses an earlier paper. Sampson argues that Professor White's conclusions are not supported by the evidence in his study. If this is indeed the case, then the theory upon which graded exercise treatment is based may be flawed, which could have profound implications for NICE treatment recommendations. Also: Join our Exams Letter Campaign : Help students with ME taking exams Seb's Clever Colouring : Is yours published here? Young Officers's page : Stunning pictures from our Young Photographers - and all in glorious colour Find out who was nominated for our new Young Hearts Award. You can nominate someone too. PLUS: THE BRIEF QUESTIONNAIRE Last but not least, please do send this in to me with your experience of schools and LEAs. This is a follow-up to the Trust's 2004 report which made media headlines. Then we started getting somewhere, but now the latest fashion for using school attendance as if it were part of a medical treatment seems to be resulting in the deterioration of suitable educational provision, particularly provision in the home. I speak as a former head teacher and know something about this subject. Just room for me to wish all of you a Very Merry Christmas - take care of yourselves, and one another - and don't forget those spare cards! Thank you in anticipation of big brown parcels arriving through the snow. Warm wishes from all of us to all of you - 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 PREVIOUS ALERTS AND REGISTER FOR FUTURE ONES AT www.tymestrust.org To unsubscribe, send an email via the website Contact Us form. ====== DO YOU KNOW ANYONE WHO WOULD LIKE TO RECEIVE OUR ALERTS? ====== 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 member of the National Association of Educational Inspectors, Advisers and Consultants (now ASPECT), a life member of the National Association of Head Teachers and a Fellow of the Royal Society of Arts. Copyright (c) 2010 The Young ME Sufferers Trust