Tymes Trust Alert 2015-01 Message from Jane 27 February 2015 ====== SEID - NEW NAME FOR ME? http://t.co/TqGuSji6pL and CONSERVATION OF ENERGY ====== It's some time since I emailed you all. But I have been working on 'instant' ways for you to catch up with our latest news and statements (and ask questions). Before I move on to the nitty gritty of this email, here's a list. KEEP UP TO DATE WITH TYMES TRUST AT ANY TIME Read Tymes Trust's Public Facebook Page www.facebook.com/tymestrust Our page is open to EVERYONE to read. No need to log in or register with Facebook unless you wish to interact. Follow Jane on Twitter @JaneCColby OR you can read my tweets at www.tymestrust.org if you don't want to join Twitter and interact. Follow Tymes Trust @tymestrust Read my Stripeysocks blog at www.methenewplague.net. SEID - NEW NAME FOR ME? These initials stand for Systemic Exertion Intolerance Disease. I have just been discussing on my blog what the name ME stands for, as originally defined by Melvin Ramsay, and why it is the name that Tymes Trust and I continue to use. Here is an excerpt. "THE CLINICAL IDENTITY OF MYALGIC ENCEPHALOMYELITIS by Jane Colby "Not many people will have missed the hoohah about SEID - Systemic Exertion Intolerance Disease - as a proposed new name for ME/CFS. You'll be relieved to hear, this is not going to be a dissection of the IOM (Institute Of Medicine, USA) report. That's not what I'm writing about. I'm going to write about ME, and about why, no matter how many names people come up with for the composite 'CFS', ME itself remains what it always was. Myalgic Encephalomyelitis. Well defined by Melvin Ramsay back in the 20th Century. A discrete disease, and not exactly what we would call 'benign' (a prefix that was originally attached). [...] "Here is what Melvin Ramsay wrote. It could hardly be clearer. The clinical identity of the Myalgic Encephalomyelitis syndrome rests on three distinct features, namely: A. A unique form of muscle fatiguability whereby, even after a minor degree of physical effort, 3, 4, 5 days or longer elapse before full muscle power is restored. B. Variability and fluctuation of both symptoms and physical findings in the course of a day. And, C. An alarming tendency to become chronic. "He goes on to contrast this with flu. “If we take the well known condition of post influenzal debility as an example of a postviral fatigue state we see that in all these particulars it constitutes a complete contrast. The fatigue of post influenzal debility is part of a general debility with no distinguishing characteristic of its own, it shows no variation in intensity in the course of a day and although it may last weeks or even many months, it has no tendency to become chronic.” [Melvin Ramsay emphasised that there are unique features about ME. These have of course become 'lost' in the muddle created by the name CFS, which the IOM would like to consign to history.] Other excerpts from my blog: "Once you mix different forms of postviral fatigue together you end up with doctors who can't understand why a child diagnosed with CFS can be severely ill for years. They make extraordinary statements like 'You've been ill for too long,' and call in psychiatrists and social workers to probe the family and the child's mental state." [...] "The IOM committee quite rightly panned the term 'fatigue' and also replaced 'syndrome' with 'disease'. SEID might fly as a replacement for the hated 'CFS', but it's still not classic ME. Both I and Tymes Trust will continue to refer to ME to distinguish it from other diseases." Please take a moment to read all of my blog here: http://t.co/TqGuSji6pL CONSERVATION OF ENERGY https://www.facebook.com/tymestrust/posts/1546931915591945 An excerpt from my January 31st post on our Facebook page. "With the latest media splurge reading like an advertisement for Cognitive Behaviour Therapy and Graded Exercise Therapy as the answer to ME, families facing child protection investigations must have been reeling in horror. Tymes Trust has now advised 139 [now 141] families in connection with such procedures, and in a number of these cases the authorities are trying to enforce these very treatments against the parents' will. "If we go back a stage, we find that the authorities have, almost without exception, seemed to believe that children with ME can recover while following a graded school attendance programme; this is of course just an educational version of graded exercise, as we have so often pointed out. "In our experience, it rarely works well, unless the child is [...] already substantially recovered..." 'STATE GUARDIAN' NEWS Tymes Trust is a co-petitioner in the Judicial Review of the Scottish Government's legislation requiring every family in Scotland to have a Named Person ('State Guardian') for their child. The initial judgement by Lord Pentland in January did not uphold the challenge, and an appeal is to be heard in June. Named Persons are already being appointed and are drawn from the same professional bodies with whom families of children with ME have had disagreements over how their children should be treated and educated. Such disagreements have triggered child protection investigations and we are keen to prevent an escalation of such traumatic misunderstandings. This subject has been covered on our Facebook page. As you see, there is plenty going on, and I have also been pleased to continue signing all the children's birthday cards, and those for our 26+ adult group. These are members who have stayed with us, and people who have joined the Trust as adult friends and supporters. We are delighted to have you all as part of our Tymes Trust 'family'. If you receive my emails but have not actually joined the Trust, you can do so if you wish on the Registration Form at www.tymestrust.org. 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 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) 2015 The Young ME Sufferers Trust