Tymes Trust Alert 2012-12 Message from Jane 22 December 2012 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== CONSENSUS PRIMER ON ME RECOMMENDS TYMES TRUST Tymes Tidings 2012 ====== Tymes Tidings 2012 is now online here: www.tymestrust.org/pdfs/tymestidings2012.pdf Why not send this link to all your friends and relations? On the cover, our Chair of Trustees writes: 'Good news! The Young ME Sufferers Trust’s website has been recommended in the International Consensus Primer for Medical Practitioners on Myalgic Encephalomyelitis (ME). The authors state: "Tymes Trust: most comprehensive information regarding education of young people with ME http://www.tymestrust.org". The Primer also has its own version of our Tymes Trustcard, a real compliment to our work!' It's unfortunate that the UK medical establishment still resists the separation of ME and CFS, because it means that most doctors have not been given reputable information about ME. Nevertheless, a number of eminent medical professionals are now working to advance knowledge of ME and explain why 'CFS' is not a credible or helpful term. I am delighted that many ME experts, many of whom I know and respect, are now speaking out. As our Chair explains, 'The International Consensus Panel consists of 26 medical experts led by Professor BM Carruthers, who believe, like us, that medicine should formally separate the discrete neurological disease "ME" from the nebulous "CFS" under which so many patients are being caught. People with ME can be damaged by unsuitable treatment. People with other conditions need to be properly diagnosed, rather then being told they are "chronically fatigued". They know that already! They need to know why, and to receive the right treatment for them.' Over the years, I've often noticed my words coming back at me. When I first pointed out that chronic fatigue syndrome was an 'artificial construct' put together for research, I didn't predict how many others would take that phrase and pass it around the net. When a phrase enters the international consciousness, you know that you said it right! In our view, CFS as a concept should never have been brought into clinical use, because (predictably) it has caused havoc both for patients and researchers. SCOTTISH PARLIAMENT You may have read conflicting accounts of why the Cross Party Group on ME folded recently, so you will find an accurate summary in Tymes Tidings, page 2. THANKS TO THE TEAM We've had some lovely emails thanking our Advice Line Team for their support this year, and I'd like to add my thanks to them, and to our wider team of volunteers who give so much of their time. All of us at the Trust wish you a happy time at Christmas and very best wishes for the New Year. 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 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