Tymes Trust Alert 2011-10 Message from Jane 15 December 2011 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== STUDY FOLLOWS DOWSETT AND COLBY and your Tymes Tidings is on the way ====== You'll probably have seen publicity for a new study done in schools around Bath, suggesting that many pupils who are often absent from school may have undiagnosed Chronic Fatigue Syndrome. CFS is, of course, not identical to classic ME, though ME cases are trapped under its umbrella. Definitions are always a bone of contention when people invent a syndrome and argue about how to define the syndrome they have invented. On the Trust's website is a commentary by Dr Elizabeth Dowsett on our research paper as published in the Journal of Chronic Fatigue Syndrome in 1997. It has an introduction by myself as co-author. Also included is the abstract and introduction of the original paper. Dr Dowsett and I studied a school roll of 27,327 staff and 333,024 pupils and discovered that CFS/ME is the biggest cause of long term sickness absence from school. The Guardian front page leader headline on 22nd May 1997 ran: 'Schools swept by ME plague'. Our study is still the largest epidemiological study of ME available to date: http://www.tymestrust.org/pdfs/dowsettcolby.pdf What goes round comes round. From denying that ME even existed in children, as the medical establishment generally did in the 1990s, it is now apparently proposed that 'chronic fatigue' lurks under a huge proportion of school desks. But chronic fatigue is just a symptom. It is not very typical of ME, which is more about fatiguability than fatigue, with symptoms of viral illness and a delayed reaction to effort. We consider it unwise to advise schools to refer their pupils direct to a specialist CFS service, as reported in The Guardian on 13th December. The majority of CFS clinics that we know of have no doctor. Fatigue can be a symptom of many conditions including cancer and heart defects, and it needs to be investigated by a doctor, however unwilling some may be to diagnose CFS or ME. It can be tragic indeed when something else is missed. Moreover, to claim such success for CBT and GET illustrates the problem of definition. This is why we published our poster ME IS JUST FATIGUE, RIGHT? WRONG. See the poster at www.tymestrust.org. TYMES TIDINGS Your Christmas mailing is on the way! Royal Mail collected a huge batch today. It includes new information about education. I won't say more now - but I'm particularly looking forward to seeing the children's colourings and answers to our competitions. All good wishes, 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 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