Tymes Trust Alert 2014-07 Message from Jane 31 August 2014 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC) A new Report from Tymes Trust ====== This is the inside story on the Collaborative: http://bit.ly/1vSRhOI Our Report is based, not on speculation or conjecture, but on direct evidence from emails exchanged by the participants. We think this is key reading for the ME community. INTRODUCTION When the UK CFS/ME Research Collaborative (UK CMRC) was set up in 2013, the Young ME Sufferers Trust declined to attend the launch, due to concerns we expressed in a Statement, the text of which is here: http://www.tymestrust.org/txt/alert201305meawarenessday.txt Our concerns continue. The following information is from 212 email chains and associated attachments received from an FOI request to the Medical Research Council (MRC). We note: In the run-up to the full formation and launch of the Collaborative, a meeting was recorded by the Science Media Centre (SMC)'s outgoing head of Mental Health (details below). In attendance were key persons now involved with the Collaborative. Under their heading 'Harassment' (of researchers) they list: * Freedom of Information Requests * Complaints to the GMC and various institutions * Parliamentary Questions A series of Action Points include: * 'Support4rs - Work with Peter White and Simon Wessely to develop resources for dealing with harassment' * 'SMC – Run a press briefing on biosocial illness to improve public understanding.' NB Two sets of written records are kept of Collaborative meetings; one for the Board, another for the public. This should be borne in mind when reading records that are placed online. Freedom of Information (FOI) requests were listed as the most damaging type of 'harassment'. Full report here: http://bit.ly/1vSRhOI ANSWERING YOUR QUESTIONS You can always read my latest news and comments on Twitter - that doesn't mean you need to join Twitter. You can go to www.tymestrust.org and follow my tweets there. However, if you wish to take part in conversations with me, joining Twitter and following me @JaneCColby enables you to do that. With all 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) 2014 The Young ME Sufferers Trust