Journal of IiMER Volume 10 Issue 1 June 2016 My name is Mike Harley; I’m from Bristol and I’m about to run my 6th of 28 planned EU marathons for charity, that’s one in every member state. On Saturday 4th June 2016 I’m heading out to run the Stockholm Marathon before another 2 marathons this year: Gdansk in Poland and Toulouse in France. I want to raise the profile of ME all over Europe and connect charities, researchers and patients together to share resources and lobby their governments for biomedical research and progress. Ultimately I want to help affect a change in the UK/across Europe but also a real shift in the perception of this awful, indiscriminating illness. The icing on the cake for me would be to make it through all the marathons in one piece and see some of my friends well on the road to full recovery. I hadn’t heard of ME really before my friend Ian came down with it over 9 years ago. Ian is one of my oldest mates and even though for much of the last decade he’s been too ill to work and lost some of the best years of his life to ME, he’s always been the same positive person throughout. After a few years of no real improvement and not seeing him as much as before, I wanted to find out a bit more about what was making him ill and what could be done. He’s taught me a lot about the inconsistencies in treatment, both the lack of up-to-date knowledge from GPs and funding for biomedical research from governments not just in the UK. It wasn’t until he told me about Invest in ME and the work they’re doing with the top scientists and researchers that I started to learn more about ME and how ‘well folk’ can potentially help them to find a cure. Around the time that I got involved with fundraising, Invest In ME were already on the way to crowd-funding enough to set-up a Rituximab trial, B-Cell research and beginning to finalise plans to create a UK ME treatment and research centre in Norwich drawing upon their strong ties with some of the best researchers and scientists from around the world. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 33 of 77
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