Tymes Trust Alert 2011-01 Message from Jane 22 January 2011 ====== NICE EVIDENCE and other matters ====== It's three weeks into January - where's that gone? I was intending to email you all earlier this week, but we had another case where a paediatrician went back on an ME diagnosis and referred the family to social services. We've been assisting the family and their GP. A number of you will have been through something similar and I'm sure you will sympathise. I've now informed the All Party Parliamentary Group's Secretariat that the Trust expects my presentation on Child Protection Issues (made to the APPG in 2008 at their request) to be acted upon. I await hearing their response. You can read it here: www.tymestrust.org/pdfs/childprotectionissues.pdf CREATIVE DESIGNER PAPER - GOING FREE Unlike Moley in "Wind in the Willows" I haven't the energy for spring-cleaning just now, but I did start our yearly stock-take and discovered a stack of beautiful designer paper - A4 size. It's suitable for printers and also for drawing, letters, displaying poems, photos and other creative work. We're giving it out free because it can be therapeutic to do creative activities while stuck in bed or on the sofa. We only need you to cover our post and packing costs. Email me and let me know how many sheets you want. Six designs: snowy scenes, smiley faces, sunflowers, grapes, party decorations and fireworks. Would you like a set of sheets that are all the same, or a selection? NATIONAL INSITUTE FOR CLINICAL EXCELLENCE If you haven't seen our evidence to NICE, arguing that their 2007 guidance on ME should be reviewed, our submission is in Vision 2010-3 at www.tymestrust.org/tymesmagazine.htm. We explained that two new papers have implications for NICE's treatment recommendations of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET). The first paper (which the Trust co-funded) is by Gwen Kennedy et al. This showed that "biomedical anomalies seen in adults with CFS/ME can also be observed in children with clinically diagnosed CFS/ME compared with matched controls". Importantly, these abnormalities are consistent with persistent viral infection. Although NICE's remit doesn't include aetiology (the cause of an illness), if aetiological discoveries have relevance for treatment we believe that such discoveries MUST be taken account of by NICE. This discovery goes towards explaining why patients commonly report being made worse by exercise during their recovery process. Encouragingly, there is plenty of evidence from patients (including myself) that those who are NOT treated with graded exercise make good recoveries over time, as in many other viral illnesses for which there is as yet no antiviral treatment. In the second paper, DP Sampson reanalysed data from a Lancet study upon which the "deconditioning" theory of ME/CFS appears to have been based. Sampson argues that the author's conclusions are not supported by his evidence. If this is the case, then the theory upon which graded exercise treatment is based may be flawed, and that could have profound implications for NICE's treatment recommendations. Details of both papers are in Vision. It's going to be a controversial year, I predict. If you know anyone who'd like my emails, I'll be happy to add them onto my list. Take care of yourselves, as always. 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