Tymes Trust Alert 2011-08 Message from Jane 25 October 2011 ====== Follow Jane on Twitter @JaneCColby or read her daily tweets at www.tymestrust.org ====== 'ME IS JUST FATIGUE, RIGHT? WRONG' and:'Research showing ME is a physical disease' ====== If you've been reading my tweets, you'll have seen that Mark has now placed the second poster in our awareness raising series prominently on our website. The message reads: 'ME is just fatigue, right? WRONG'. The striking photo features one of our members, tube-fed because she could not at that time eat for herself. We have all read so much nonsense about ME in the press this year. It is time to tell it like it really is and to forward this link far and wide. See the poster here: http://bit.ly/tt-wrong The good news is that, after she and her family declined graded exercise treatment and managed her illness carefully, avoiding any treatment 'programme', this little girl has come through the worst of the illness and grown into an independent-minded, academically gifted young woman with a strong sense of justice for children with ME. How many times do I hear a similar story of improvement through withdrawing from misguided if well-meant treatment? It confirms all that Dr Betty Dowsett, Dr Alan Franklin, Dr Nigel Speight and Byron Hyde MD have always said. And it reflects my personal experience of severe ME. RESEARCH SHOWING ME IS A PHYSICAL DISEASE On the reverse of our poster we have summarised the 2010 Dundee research into children's blood, showing evidence consistent with persistent viral infection. As most of you already know, Tymes Trust co-funded this research. The headline reads: 'Research showing ME is a physical disease'. We don't go along with the fashion among some doctors and researchers who tend to denigrate the very concept of a 'physical' disease. Such professionals prefer to emphasise instead that all disease, including ME, is a mixture of the physical and psychological. As I said when I was on the panel at the MEA Question Time in Huddersfield recently: 'Try telling that to someone with a broken leg.' No-one should let academic arguments obscure their common sense. It is vital that researchers continue providing evidence for the presence of viruses that are known to attack people with ME. And it's also vital that when such evidence has been published, we all continue to keep it at the forefront of the public's mind. Read it here: http://bit.ly/tt-phys Poster leaflets cost £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 a doctor's attention to the research information. Please forward this message to anyone you think would like to know. All good wishes, and don't forget that if you need help, our ME-friendly Advice Line Team is on 0845 003 9002. 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 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 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) 2011 The Young ME Sufferers Trust