TYMES TRUST ALERT 25 December 2009 Jane Colby FRSA Executive Director The Young ME Sufferers Trust www.tymestrust.org ====== VISION 2009-3 now online in full colour www.tymestrust.org/pdfs/vision2009-3.pdf THE BRIEF - Jane Colby's complete Witness Statement www.tymestrust.org/pdfs/brief2009-3.pdf ====== To wish you seasonal cheer and let you know that Vision 2009-3 is now online in full colour, plus the latest issue of The Brief, consisting of my (Jane Colby's) complete Witness Statement to the Judicial Review of the NICE Guideline on CFS/ME. You can also read a Christmas message on our home page from Burn Gorman (Torchwood, Bleak House, Wuthering Heights and recently Bill Sykes in Oliver Twist at the Royal Court Theatre, Drury Lane). Burn joined us at our first Learning Commitment Awards at the House of Lords. Special thanks to those who have sent us cards and messages of support. In his Vision column, our Chair Keith Harley writes about how the Trust runs on the principles of Philanthropy, Efficiency and Independence. He points out that 'no-one at the Trust is paid for their time and commitment' and explains that 'during the last financial year, we managed to provide all our services, including all costs for administration, telephone, post, travel to the Houses of Parliament and other essential venues, plus your birthday and Christmas cards, individual information packs, services to Partner Groups, printing of Vision, MiniVision, The Quick Tour and all those many other costs that come with running a charity, for the total sum of £10,134.' Keith continues: 'Those of you who run businesses or manage finances will know what an achievement this is. It certainly couldn't be done without loyal and regular work by our Team who give their time in so many ways. [...] I realise that, of course, by drawing attention to our cost-effectiveness we might give the impression that we don't need your fundraising efforts. Far from it! We receive no government grants; indeed, we do not seek them as, in the words of Libby Purves, such grants come with implications. As she aptly put it in The Times (23rd December 2008) "Government grants also act as a secret gag, preventing harsh plain-speaking against bad policies by those who know their stuff".' Our independence is of prime importance to us. My Witness Statement in The Brief was written from this same perspective. I had been asked to address directly certain statements from another charity about the NICE Guideline; I pointed out, among other things, that their 'description of the benefits of this Guideline bears little resemblance to the reality with which we come into contact in our work.' I concluded that although there were some recommendations in the Guideline which were not unhelpful, 'it is not worth preserving that which is good if it means propping up that which is monumentally bad.' When the Guideline comes up for review, the Trust will be making further representations. VISION 2009-3 IN SUMMARY: Vision : The Project - Philanthropy, Efficiency, Independence House of Lords 2010 - Your display : 'How ME Affects Me' Review of 2009 - Judicial Review of NICE, RSM Conference, ME and Viruses Burn Gorman's Christmas Message - Strength, determination and peace Things 4 U 2 Do - Story challenge, find the missing rhymes, colouring Seb's Amazing Art Archive - What makes you smile? Young Officers - Advocate, Artist UK, Competition Champ, Artist Overseas 21st Anniversary Presentation - Host, Colchester ME Self Help Group AND Mr Harley's Misbehaving Menagerie - Could you give one a loving home? With warm thoughts from all of us at the Trust. Jane ====== 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) 2009 The Young ME Sufferers Trust