The Young ME Sufferers Trust www.tymestrust.org April 2005 ====== In Vision : What is the ME Alliance, what is it doing and why do we belong? ====== In 2002, the Dept of Health published a report by the Chief Medical Officer’s Working Group on CFS/ME. The Young ME Sufferers Trust was a member of the Group along with other ME charities, six of whom now form the ME Alliance. The Trust took a prominent role in producing Chapter 5, on children with ME, which made excellent recommendations. We published The Key Points which you can find at www.tymestrust.org/tymespublications.htm Any consensus document comes about by joint working. It is time-consuming and very hard work. We know from experience just how hard it is to obtain consensus on anything! In 2004, after speaking in the Scottish Parliament on the dominance of psychiatry in ME - and the need to challenge this - the Trust met with the other Alliance charities to plan the future. The point of an Alliance is to stand together over vital issues. We suggested a joint campaign for ME Awareness Week 2005. The campaign will target the need for early diagnosis. Psychiatric bias has traditionally discouraged doctors from diagnosing ME on the theory that patients may stop trying to get well. Our campaign will push for people to be told what is wrong as early as possible, so they can be helped. The Alliance met on the same day as the funeral of Jade Louise Scarrott, and began with a two-minute silence in her memory. By the end, we had all drawn up an Agreement. Point (c) of the Agreement will be particularly important. It is no secret that we all have different policies, approaches and opinions. Doing a joint project was never going to be a pushover. But many young people and adults belong to several ME charities and wish us to use our combined strength for the good of patients. Let it not be said that we ignored their requests. The ME Alliance Agreement The Common Aim is to secure improved recognition, care, support and information for all those whose lives are affected by ME/CFS/PVFS. The Objectives are to: a) agree public statements on common issues b) agree and plan joint campaigning activities where appropriate c) recognise issues on which members agree and resolve or recognise differences in policy or approach d) to promote the collection and exchange of information on ME/CFS/PVFS e) to establish and sustain a high standing for the Alliance f) to identify issues of mutual concern and pursue agreed courses of action g) to secure increased recognition and understanding of ME/CFS/PVFS h) to seek to inform and influence policy-makers about the needs and circumstances of people with ME/CFS/PVFS The Alliance members wish to foster a spirit of co-operation and mutual encouragement among member organisations for the good of the cause. ====== Copyright (c) 2005 The Young ME Sufferers Trust