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
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)
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