TYMES TRUST ALERT 31 March 2010 Jane Colby FRSA Executive Director The Young ME Sufferers Trust www.tymestrust.org ====== CARE PATHWAYS FOR CHILDREN WITH ME ====== Earlier this year, the Trust was approached by the Welsh Assembly Government for our views on care pathways for children with ME, as requested by the Minister for Health and Social Services in the Welsh Assembly. He wished to know of any existing pathway that we would recommend. I provided the following response: "There is no published care pathway that we know of, which we would recommend. We recommend GP management supporting self-management, under consultant where needed, but not where the person is managing their illness well. GP support for practical measures such as benefits, practical home aids and home/virtual tuition are vital. "Clinics supplying psychological therapies for ME have in our experience generally proved a disaster in England and we would not like to see Wales going the same way. "We carried out a grant-funded exercise in what young people and their families want from a specialist clinic, where the health authority is setting one up. Virtually none of their views have been met. The link is: www.tymestrust.org/pdfs/ourneedsourlives.pdf "In terms of official care pathways: The children's chapter of the Dept of Health Report of 2002, which we assisted to write in our capacity as a key member of the Chief Medical Officer's children's panel, comes closest to what we would recommend, out of everything published so far." I am now pleased to note that the Westminster All Party Parliamentary Group on ME has accepted my recommendation that this Report, which preceded the NICE Guideline, should be resurrected. Whilst the main section had its flaws, the children's chapter is generally good. As a member of the panel that produced that chapter, I can say it was a hard fight to get some of our key recommendations accepted. I am therefore looking forward to using that report again. In my response to the Welsh Assembly I also stated: "NICE has also been a disaster and we would not wish to see the NICE Guidelines used in Wales. It is bad enough here in England. Children are routinely being referred for graded activity and in our experience are routinely relapsing as a result. I refer you to my Witness Statement for the Judicial Review of the NICE Guideline at www.tymestrust.org/pdfs/brief2009-3.pdf and to our original evaluation of NICE where we listed the best aspects, as well as the problems, on pages 18/19 of Vision 2007-2 available at www.tymestrust.org/pdfs/vision2007-2.pdf. [...] "Possibly the most important helpful aspect of NICE was its reminder that patients have a right to decline treatment. In practice, they don't understand until it is too late, that CBT and GET typically makes classic ME patients worse. It appears to us from our personal and professional experience that only those who are substantially recovered, or who did not have classic ME to start with, but some other fatiguing illness coming within the wide CFS net, are helped by these therapies. Where GET therapists allow patients to stop an activity that is making them feel bad, and respond to their symptoms, this is not in fact GET, but pacing. Patients find that pacing themselves is the most helpful form of management. This is confirmed by many expert physicians, though not those of the GET school of thought. "Domiciliary support and support for home tuition/virtual education, in which we have experience, is vital for children with classic ME. School attendance is typically one of the biggest causes of relapse. The other, in our experience, being general over-activity including GET." The complete response will be made available publicly at a future date. More news soon. Jane Colby ====== READ PREVIOUS ALERTS AND REGISTER FOR FUTURE ONES AT www.tymestrust.org To unsubscribe, send an email via the website Contact Us form. ====== DO YOU KNOW ANYONE WHO WOULD LIKE TO RECEIVE OUR ALERTS? ====== 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) 2010 The Young ME Sufferers Trust