Tymes Trust Alert 2012-02 Message from Jane 29 February 2012 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== CRUEL COMMENTS SHOULD BE REPORTED ====== Over the last week I have shared with my followers on Twitter some of the things that have been said to children with ME and their families. I have of course anonymised them. Judging by the reaction, and all the retweeting that has been going on, people are amazed that these statements could have been made by professionals. Unfortunately, such occurrences don't seem to be as rare as we'd like to think. I have now decided to collect further examples. This is because, when I was planning to include an example in a presentation to the All Party Parliamentary Group on ME, I was asked by another ME organisation to avoid giving the impression that this was a common event. Well, having reviewed some of our Advice Line Records, I'm not convinced that it is all that uncommon. My brief review revealed the following: A professional arrived at a mother's home and told that her child with ME would be taken into foster care and that she herself would be put in prison with murderers and rapists if she didn't send her child to school. A doctor told a school that winter typically makes people with ME worse, but the reaction from a member of school staff was to say that the family should just get a light box. The 'sleep police' are ordering children with ME not to take naps if they feel they need them. Some of these professionals are well-known in the ME field and should surely know better. The late Dr Alan Franklin described forcing sick children awake inappropriately as 'cruel' as well as unproductive. And then we come to the extreme comment that I included in my APPG presentation: a child needing a wheelchair was told by a doctor that her legs might have to be cut off. This was not only a breathtaking lie but it must have terrified the child. I would class this comment, and others like them, as a form of abuse. Of course, such comments also reveal a serious lack of knowledge about ME. For example - as ME expert Dr Elizabeth Dowsett always explained - having the option of a wheelchair can not only help a child get out and about, but also rest the leg muscles so they have an opportunity to heal. I remember a young girl who found the muscles in her arm stopped working. All she had been doing was over-using her arm muscles by typing on the computer too long. When she rested them, her arm function returned. Dr Dowsett often used to point out that the muscles of someone with ME do not function like muscles that are fit and well and they need time to heal. Information on this is in 'Physios urged to go cautiously', a letter of mine that was published in Physiotherapy Frontline. You can read it here: http://www.tymestrust.org/pdfs/physiosguide.pdf I would advise parents to report professionals who make such remarks as those I have listed. Whether they spring from frustration at not being able to cure the child, or from annoyance that the child seems to them uncooperative, these remarks are inexcusable. Do send me any comments which you wish to bring to my attention. It is important that we are armed with the facts. We cannot just turn away in embarrassment at the behaviour of the professions with whom we are trying to work, and pretend that this is not happening. Jane Jane Colby FRSA Former Head Teacher 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) 2012 The Young ME Sufferers Trust