TYMES TRUST ALERT 01 February 2010 Jane Colby FRSA Executive Director The Young ME Sufferers Trust www.tymestrust.org ====== THE TRUST IN THE INDEPENDENT ...AND A CHRISTMAS CARD APPEAL ====== As the first of this year's Alerts it is sad to have to mention the tragic case of Lynn and Kay Gilderdale, who have been in all our thoughts as the media reports continue. This evening at 8.30, Kay will feature on Panorama, BBC1. In the wake of the court case, one of the Trust's severely ill members was featured in The Independent on 27th January, in a double-page spread. Elaine, who has spent time as one of our Advice Line Team, gave an in-depth interview to reporter Cahal Milmo about her daughter Kate's illness. Kate is quoted: 'Doctors appear uncomfortable with the entire subject and are often dismissive and judgmental. It's completely isolating. Some days it's quicker to say where it doesn't hurt. I stay in bed all day, every day because if I don't the illness is unbearable.' The Trust is mentioned, and Cahal also interviewed me: 'Jane Colby, executive director of the Tymes Trust and a former headteacher who spent four years with severe ME, said: "Chronic fatigue syndrome is a medical nonsense. ME needs to be treated as a separate and specific condition. Unfortunately, we are in a situation where professionals in medicine, education and social services still do not know how to recognise it and where its terrible severity goes unrecognised."' In the printed paper is a lovely photo of Kate before she was ill. Here is the full article online: http://www.independent.co.uk/life-style/health-and-families/health-news/ me-case-study-she-told-me-that-she-did-not-want-to-carry-on-1879983.html Kate herself is not well enough to write or be personally interviewed, but she dictated her thoughts to Elaine. Kate says: 'It's hard for family and friends to fully comprehend what you go through and eventually the illness goes on so long, even family members get tired of hearing how utterly ill and bone weary you feel and stop asking. [...] You seem to lose everything and everyone, friends and family. The only people who are still there when the smoke clears are the ones that truly care. A life lesson I feel I am too young to have had to learn. The symptoms are erratic and random. They say you have good days and bad days, you don't you with ME, you have bad days and worse days mostly. You get tired of always feeling ill and not being able to do anything, even move occasionally, you feel trapped inside your own skin, sometimes literally. You find things you used to think trivial the things you miss the most, like going outside even going downstairs.' The Trust will be publishing Kate's account. We have given her one of our Shirley Conran Writing Awards for her great effort when she is so severely ill. CHRISTMAS CARD APPEAL We all know how vital it is that young people with ME know that they are remembered and cared about. We have always sent personally signed Christmas cards each year. After Christmas we always receive several parcels of unused cards from parents and others, to help build up our stocks for the following year. Until now we have supplemented these with a bulk purchase from a very inexpensive source. This year, our source has vanished. Dried up. Gone! If you have any unused cards left from Christmas, we'd be really grateful if you could pack them securely and send them to our address below. You can save postage by taking out the envelopes, which we don't need as we put the cards into each child's copy of Vision. Thank you. More news soon. Jane Colby ====== 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