Today I participated in a seminar hosted by Action for ME in Edinburgh. I am a member by default having transferred over from AYME where i used the parents' forum which was a lifeline . I was unaware as to the politics of ME at the time ( and boy have i learned a lot about this since) The attendees were a mixture of pwme adults, mothers, carers, and the single in post specialist nurse from Fife, Keith, a ME association patient rep, a gp with an interest and experience gleaned over many years, and an east lothian council rep from their services provision. 2 scottish AFME officers,and Sonya Chowdhuray and Jonah Grunsell. Scotland is a bit of a black hole in terms of service provision and it was essentially a discussion group to try and inform ideas to provide targeted support ( scottish govt has provided a small budget). I did not quite know what to expect, there were particularly harrowing stories from two mothers relating to the treatment of their daughters 10+ years ago( when both were under 10 years old) Emma Shorter' s mum ( millions missing Edinburgh) on how GET induced severe ME for her daughter, discussion re severely affected , educating health providers and educationalists and addressing the stereotype that has prevailed for so long. There was a will to work with other charities to enable better resource management to be able to support more biomedical research and people. I was apprehensive, given past history, but there was a real passion and drive to improve things, so perhaps follow through will happen. Good suggestions from the discussion being Utilising guidelines from other chronic illnesses to devise guidelines/ protocol for healthcare for severely affected to enable regular engagement Develop a food delivery programme for fresh healthy food which could be used as a means of establishing contact regularly with those who are housebound which could enable further resources and services to be accessed.This was a suggestion from a carer and she' s working up a business plan but really needs a mentor. Good way to get decent food to those with little energy to cook. Establish a centre for excellence which can also be accessed virtually Provide info and education for gps/ health professionals Provide same for schools and a specialist team to deal with problems. Schools simply do not understand and are too tied up with attendance and attainment targets to see any bigger picture. Visual advocacy which addresses stereotypes Support of unrest film to maximise locational coverage Establishment of more professionals like Keith. He is the only paid in post specialist Scotland wide. Establishment of virtual education in scotland ( this would help kids with other chronic illnesses and mental health issues) All in all positive. It will be interesting to see what can be taken forward.