ME Awareness Day from Tymes Trust.
Tymes Trust ME Awareness
There will be a twitter Q&A conversation between 3 and 5pm today (12th May) To join in use hashtag #AskTT or tweet to @JaneCColby
The following is a statement from Tymes Trust for ME
It includes both:
ME AWARENESS DAY PUBLICATIONS STATEMENT ON NEW RESEARCH COLLABORATIVE
Tymes Trust Alert 2013-05 Message from Jane 12 May 2013 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== ME AWARENESS DAY PUBLICATIONS STATEMENT ON NEW RESEARCH COLLABORATIVE ====== Greetings everyone! For ME Awareness Day we have published an ME Awareness booklet summarising our view of how things stand in 2013. If you have joined the Trust you'll have received a printed copy by post. It's now also online here: www.tymestrust.org/pdfs/meawareness20132014.pdf The booklet covers: * Unsuitable regimes - Families have the right to decline * Research - What causes ME? * ME v CFS - Dr Byron Hyde and Professor Bruce Carruthers * Child Protection Implications - Severity or chronicity trigger investigations * Fatigue Clinics are not ME Clinics - The 'fatigue' model * Managing Education and School - Webinar for Local Authorities, schools, parents * Seb's Awareness Spread with a rhyme to complete - and Gregory's Poohsticks, another jolly picture for colouring. We have also updated our Quick Tour of ME, here: www.tymestrust.org/pdfs/quicktour.pdf Available as a printed 3-fold leaflet, the Quick Tour summarises ME, its symptoms and management in an easily digestible form. Q&A on ME Awareness Day My Twitter followers will be taking part in another Q&A session today. They will tweet their questions to @JaneCColby using the hashtag #AskTT from 3-5pm. If you don't use Twitter, you can still check out my tweets at www.tymestrust.org. We have recently issued a statement which you may have seen on various internet forums. Here is your own copy, for reference. STATEMENT BY THE YOUNG ME SUFFERERS TRUST The Young ME Sufferers Trust is issuing this statement to clarify our reasons for not accepting an invitation to the launch of the UK CFS/ME Research Collaborative in London on 22nd April 2013. We will not be participating in the Collaborative. Key issues * Our research priority This Collaborative is continuing down the chronic fatigue route. By contrast, our priority is to end the confusion of including ME (myalgic encephalomyelitis), understood for decades by microbiologists as a persistent viral infection, under the umbrella term of CFS (chronic fatigue syndrome) which mixes patient cohorts and confounds definitions, research and treatment. Good quality biomedical research, relevant to ME, is vital. We ourselves co-funded such a study which showed blood abnormalities in children, consistent with a persistent viral infection. Our research priority is for enteroviral studies. Years of research by virologist Dr John Chia of the Enterovirus Foundation is validating ME as a persistent viral infection; his work on 'CFS/ME' should surely be repeated in the UK under ME criteria, for it could be that, in future, vaccinations and antiviral drugs will be effective. * The Collaborative Charter We would never sign up to such a Charter. This Charter, which Collaborative members must adhere to, contains 'gagging' clauses which appear to us to equate legitimate criticism and concern for patients with harassment. In our view it is intimidatory and entirely against transparency. * Charities We believe that charities signing up to this Collaborative and its Charter are repeating the mistakes of history, some examples of which are detailed in our address to the Scottish Cross Party Parliamentary Group on ME in 2004. You can find this address here: www.tymestrust.org/txt/view200403scottishparliament.txt * Direction Back in 1996, the national charities of the time rolled over and accepted the term 'CFS' as a result of the Royal Colleges Report, where the lead was taken by the psychiatrists. Subsequent events have proved that it is unwise to compromise on one's principles, and the Trust will never do that. The Young ME Sufferers Trust www.tymestrust.org END OF STATEMENT Let's all stand together in continuing to spread awareness of ME and as always, the Trust will do its best to assist you in your own situation. All our 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) 2013 The Young ME Sufferers Trust