Tymes Trust Alert 2017-02 : TYMES TRUST SUBMISSION TO NICE 2017 Message from Jane 29 July 2017 ====== TYMES TRUST SUBMISSION TO NICE'S CONSULTATION 2017 http://www.tymestrust.org/pdfs/ttnice201707.pdf READ KEY QUOTES BELOW ====== Dear All Possibly the key quote from Tymes Trust's submission to NICE's consultation (on whether they were right to decide against updating the 10 year old Guideline, thereby leaving it on the static list) is this: "To effectively censor one side of the current evidence on this disease, and the serious step taken by the CDC, is to present a partial, rather than impartial view to unsuspecting parents and their doctors – surely an unethical stance that is already reflecting poorly on NICE and its reputation. Once the medical profession learns that NICE is now, in effect, actively promoting one side of the medical debate and suppressing the other, this cannot fail to have consequences." The landmark decision by the US Centre for Disease Control (CDC) was this: it removed cognitive behaviour therapy (CBT) and graded exercise therapy (GET) from its website. This effectively split the medical debate about ME in two, somewhere in the middle of the Atlantic! We believe that NICE's position of "no change" flies in the face of events and is not tenable. OTHER KEY QUOTES * On the question regarding the guideline's present status: "The Young ME Sufferers Trust [Tymes Trust] believes that it is essential to remove the guideline from the static list." * On the increasing number of erroneous child protection referrals: "NICE now has the opportunity to highlight prominently that there is now profound medical disagreement on the efficacy and safety of its hitherto recommended treatments. If it fails in this vitally needed task, we see no abatement in the current distress and trauma suffered by innocent families and their sick children, if they are unfortunate enough to contract ME." * On medical misperception: "However, given that, as a consequence of NICE's treatment recommendations, children are routinely referred to mental health services rather than for further biomedical assessment and treatment such as symptom amelioration, the overall perception and widely held view amongst medical practitioners is that ME/CFS is a mental health disorder. This has resulted in the common expectation that mental health treatment will enable an apparently severely sick child to get back promptly to full time school attendance.." * On discrimination: "..children disabled with ME commonly suffer discrimination because doctors are uninformed regarding educational rights, and about modern educational methods.." As you know, Tymes Trust is the only UK national charity dedicated to children with ME. Our submission is succinct and very much to the point, so I hope you'll be able to read it in full. NICE posed four questions. Here are our answers. OUR FULL SUBMISSION http://www.tymestrust.org/pdfs/ttnice201707.pdf SUMMER NEWS Don't forget that if you have joined Tymes Trust as a parent, or alternatively if you have registered your child with us, and you therefore have only a single membership, you can at no cost upgrade your membership to our new Joint Parent and Child membership. You'll be on our MembershipPlus group which receives invitations to our events plus extra mailings and news. A summer mailing will be on its way in the next couple of weeks if all goes to plan. When renewal of your joint membership comes round next January, you can then decide whether to revert to single membership. We'll send you a reminder in good time; it only costs £10 per year. * All you need to do now, is fill in the Registration form at www.tymestrust.org with your own name, followed by your child's (there is room for you both on the same line). Put "MEMBER" after your names, so we know one of you is already a member. We'll then convert your single membership to joint and send you confirmation. I hope you will have a good summer despite any extra health difficulties that may arise if we have very hot weather. Please pass on our good wishes to your children. And tell them we love to hear how they're doing - if they're up to letting us know. If they're very poorly, you can ask for a surprise gift to be sent to cheer them up. With my best wishes to everyone. 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, or if you have received this Alert in error, please 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) 2017 The Young ME Sufferers Trust