Tymes Trust Alert 2011-02 Message from Jane 27 February 2011 ====== GUARDIAN LETTER ABOUT THE PACE TRIAL "ME - the truth about exercise and therapy" ====== "It's going to be a controversial year," I predicted in my last email. Well, it already is. On 24th February The Guardian newspaper published a letter from me which they headlined: "ME - the truth about exercise and therapy'. My letter responded to outlandish claims made in the press last weekend after the release of the PACE trial results - a trial of graded exercise therapy, cognitive behaviour therapy, and a hybrid called APT (adaptive pacing therapy - which isn't common-sense pacing as most of us know it). You can read the letter here: www.guardian.co.uk/society/2011/feb/24/truth-about-exercise-and-therapy It reads: Reporting on the PACE trial of treatments for ME/CFS by Professor White and colleagues, Sarah Boseley (Report, 18 February) writes that patient groups "insist it is a physical disease, which probably has a viral cause". Research co-funded by The Young ME Sufferers Trust and published by Dundee University last year revealed abnormalities in children's blood consistent with persistent viral infection. The trust deals with childhood cases so severe that sufferers cannot swallow and have to be tube-fed. Too weak to walk, they need to be carried and suffer unbearable neuropathic pain. Professor Malcolm Hooper points out that the World Health Organisation classifies ME as a neurological disorder but that the PACE researchers selected patients on criteria that exclude neurological disorders. They claim that graded exercise therapy (GET) and cognitive behaviour therapy (CBT) promote recovery. However, in the latest study of GET and CBT for people with chronic fatigue syndrome, researchers concluded that the treatment resulted in worse physical function and bodily pain scores (Clinical Rheumatology, 15 January 2011). In the practical experience of the families we help, we found children's symptoms are exacerbated with GET, and a period of extended convalescence is needed to enable their strength to return. In 2010, we were honoured to receive the Queen's Award for Voluntary Service (the MBE for volunteer groups) and we feel it important that we distance ourselves from comments in the article by the Association of Young People with ME, calling for the PACE trial to be replicated in children. Such misguided views have already caused too much distress to patients and families. Jane Colby FRSA Executive director, The Young ME Sufferers Trust You can also find the letter by going to www.tymestrust.org and clicking on the link near the top of the page. By all means circulate this email to anyone you feel should be aware of this information. Thank you for your messages of support for our work. If you need advice urgently, always phone in and if we're busy, leave a message on our answerphone so that the Team can get back to you. After all the nonsense that was written about ME in the past, it's been very upsetting for families to read the latest headlines suggesting that with exercise all will be well. For youngsters who particularly need cheering up at this time, we still have some teddies and other gifts available. (When I say 'youngsters', feel free to interpret that creatively!) All our very best 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 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