TYMES TRUST ALERT 17 September 2009 Jane Colby FRSA Executive Director The Young ME Sufferers Trust www.tymestrust.org ====== To subscribe to this mailing list, visit www.tymestrust.org. To respond to an Alert use our website Contact form. The Alerts system does not take replies. ====== REPORT - A NOTE FROM JANE ====== As many of you know already, we have made some changes to the schedule for publishing Vision and Mini-Vision this year, while work carries on for The Colby Report. This is taking rather longer than expected! Such projects often do. On 12th September, I visited the Worcestershire ME Support Group to give a talk entitled "ME and Viruses - Should We Be Worried?" This talk included some information about what I am focusing on in The Colby Report. It was good to meet those of you who attended. I discussed several issues: one is the serious problem arising from the fact that even where medical professionals accept that a viral trigger is responsible for classic ME, they are still reluctant to accept that there is also viral persistence. This means that long term symptoms are dismissed as being due to 'perpetuating factors', which generally means they consider these symptoms to be due to a patient's attitude to their illness, and to their social environment. Chronic viral persistence in the tissues of people with ME has been known about for many decades, and was recently confirmed by the work of virologist John Chia MD in California. I first drew attention to John's work in my lecture to the first Invest in ME Westminster conference, since when John has visited and lectured personally in the UK, and I also included his work in my evidence to the Gibson Inquiry. In my Worcestershire talk I quoted from a number of medical sources which reveal that little if any effort is being made to identify the virus from which each patient is suffering. This is scandalous, especially given that doctors are being advised not to give tests which might show such things up. Even when I was myself diagnosed back in the 1980s, the virus that had caused my own very severe case was identified. This has been helpful in many ways, including simply as evidence of organic disease. I also referred to the speech which the Trust's Young Advocate Shannen Dabson delivered so well to the Royal Society of Medicine Conference earlier in the summer, where I gave the Welcoming Address. The Trust is preparing a new publication from two versions of her speech which will be available later in the year on our website. Whilst writing this note to you all, I should like to give public recognition to the work of everyone on our Advice Line and Professionals Referral Service who worked so hard over the summer to resolve yet another child protection case, where a family was under threat. Midsummer is usually a lighter time on the Advice Line as school pressures are lifted. This year it was all hands to the pump. It was good to hear from the family that the case is now formally closed. More news soon. Jane ====== READ PREVIOUS ALERTS AND REGISTER FOR FUTURE ONES AT www.tymestrust.org ====== DO YOU KNOW ANYONE WHO WOULD LIKE TO RECEIVE OUR ALERTS? ====== 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 member of the National Association of Educational Inspectors, Advisers and Consultants (now ASPECT), a life member of the National Association of Head Teachers and a Fellow of the Royal Society of Arts. Copyright (c) 2009 The Young ME Sufferers Trust