Tymes Trust Alert 2013-07 Message from Jane 21 August 2013 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== TYMES TRUST AND NICE : STATEMENT Also: don't forget to read Episode Two ====== A misleading statement about the Trust has been placed by a paediatrician on an online clinic forum (which was run under the Talk Health Partnership) and I thought you would like to see my Statement, posted on the forum as a response. This Statement contains important quotes from the NICE Guideline which may be helpful if you are seeking home tuition or virtual education, or to withdraw from a paediatrician's plan that does not suit your child. As you know, NICE (the National Institute for Clinical Excellence) published a Guideline on CFS/ME in 2007, to which doctors are supposed to have regard. We do not agree with everything in the Guideline, but they did take our advice in some key respects. Our Statement reads as follows: TYMES TRUST Dr Caroline Grayson wrote on this forum that The Young ME Sufferers Trust (Tymes Trust) does not follow NICE Guidelines. In an appraisal of the NICE Guideline (Vision 2007-2) the Trust wrote: "NICE has acted on a number of the Trust’s recommendations [...] NICE recommends a flexible approach to education, with home tuition and equipment that ‘allows a gradual reintegration into education’. This does not say ‘reintegration to school’, reflecting our recommendation that education should not necessarily mean school attendance. There are other means of learning which may be more suitable, such as the interactive online schemes for which the Trust is in partnership with Nisai Virtual Academy." "NICE advises doctors: ‘do not use time in education as a sole marker of progress of CFS/ME [this was a strong recommendation by the Trust], and ensure a balance between education and home and social activities.’ We know that school attendance has unfortunately been used as a marker of recovery without reference to whether symptoms are provoked, or whether attendance is hindering academic progress." The Trust's appraisal also explains that NICE "emphasises the individual’s ‘right to refuse or withdraw from any part of their treatment plan without it affecting future care.’" Since NICE, the Trust has advised the government on its 2013 statutory education guideline for LEAs, and our recommendations were incorporated into the Guideline. A 25 minute webinar for parents, schools and LEAs, showing how the new guideline helps children with ME, is here: http://www.nisai.com/Articles/350386/Nisai/News/Jane_Colby_on.aspx Jane Colby, former Head Teacher and Executive Director of The Young ME Sufferers Trust PLEASE DO NOT REMOVE THIS POST For your convenience, here is a link to the above post at the online clinic itself: http://www.talkhealthpartnership.com/forum/viewtopic.php?f=492&t=4741 VIRTUAL SUCCESS You may like to watch this encouraging media interview with Nisai Learning student Kate, on her A-Level achievements despite having ME: http://www.theguardian.com/education/video/2013/aug/15/how-i-got-my-a-levels-at-a-virtual-school-video You can also read our Statement on the use of Virtual Education for children with ME, which I launched at our House of Lords event in 2012: http://www.tymestrust.org/txt/alert201205statementonvirtualeducation.txt AND EPISODE TWO : DUBLIN GP INSULTS ME PATIENTS ON LIVE TV If you haven't yet read Episode Two of my book ME - The New Plague 2 : Reclaiming the Patient's Voice you can find it here: http://www.methenewplague.net/Read-the-latest-episode.html This episode stars Adam Boulton interviewing me when the Dowsett/Colby study was published. If you would like to go on my booklist to receive an email whenever my blog or the book are updated, there's a contact form designed for this purpose at www.methenewplague.net which also has room for any comments you'd like to make. 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 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) 2013 The Young ME Sufferers Trust