Tymes Trust Alert 2014-01 Message from Jane 5 February 2014 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== ME RECOGNISED AS DISABILITY UNDER EQUALITY ACT Also: John Whittingdale OBE MP becomes Tymes Trust Patron More on Child Protection Issues ====== The Rt Hon the Earl Howe, Parliamentary Under Secretary of State for Quality (Lords) at the Department of Health, is one of Tymes Trust's Patrons. He has confirmed in a letter that: "The Equality Act 2010 sets out the need to treat people equally who have a protected characteristic such as a disability. ME/chronic fatigue syndrome (CFS) falls within the definition of disability and so organisations must assure themselves that such considerations have been taken into account in the commissioning of services." This is an important statement that you can quote if you are faced with doctors who say that ME does not exist (yes, this is still happening!) or schools/colleges/universities that are not making suitable arrangements for the education of young people with ME. Earl Howe has taken care to use the term 'ME' as well as 'CFS' so you should be able to call to account anyone who is not fulfilling their obligations under equality law. JOHN WHITTINGDALE OBE MP BECOMES TYMES TRUST PATRON John Whittingdale has represented Maldon in Parliament since 1992 and is the Trust's constituency MP. He is Chair of the Parliamentary Select Committee on Culture, Media and Sport and you will probably know his face well from his many television interviews and appearances. At a recent meeting with him, he kindly agreed to become a Patron of Tymes Trust and is currently pursuing a matter of importance for us. MORE ON CHILD PROTECTION ISSUES Once again, I return to this whole issue of inappropriate child protection investigations of families whose children have ME. We are still engaged in addressing this problem. Paediatrician Dr Nigel Speight is a member of the Trust's Professionals Referral Service. I have worked with Nigel since the early 1990s, including on the Chief Medical Officer's Working Group and compiling the subsequent report. This report, which made important statements about child protection, was never issued to doctors but it was published by the Department of Health: read our booklet 'Revisiting the 2002 Department of Health Report on CFS/ME here: http://www.tymestrust.org/pdfs/revisitcmoreport.pdf Dr Speight has recorded several interviews and in one of these he describes some of the cases he has dealt with or helped the Trust with. We are now up to our 115th such case and I do urge you to call our Advice Line if you should suspect that anything like this is likely to affect you. It is important to seek advice early; we do advise families to see their child's medical and school records to find out what may be written there. It is your right to see these. Dr Speight's interviews are at http://wp.me/s3Txzy-18527 Dr Speight is also taking part in a web-based question and answer session on Friday, February 14 from 5-5.30pm (Central European Time – one hour ahead of GMT) arranged by the Dutch organisation ME/CFS Vereniging (in English). You can arrange access at www.me-cvsvereniging.nl/chatvenster. If you know of anyone, friends, family, other acquaintances, professionals, who may find my Alerts useful, do suggest that they subscribe (this is free of charge) by typing their email address into the box at the top of our home page www.tymestrust.org. 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) 2014 The Young ME Sufferers Trust