As a preparation to his next EU-marathon in Amsterdam on Sunday 15th October next, Mike Harley interviewed two Dutch ME-patients with severe ME – Anil van der Zee and Frank Twisk – and a former caregiver to a patient who died of the consequenses of ME, Rob Wijbenga.
Here’s what Mike is up to, already for a couple of years:
I’m running a marathon in every country in the EU (28 in total) raising awareness/funds for Invest In ME (www.investinme.org) a leading ME research charity who aim to find a cure for 250,000 UK sufferers including one of my best friends, Ian.
So far I’ve done the UK, Czech Rep, Finland, Ireland, Greece, Sweden, Poland, Belgium, France, Spain, Luxembourg and Lithuania. Next up is number 13; Amsterdam (Netherlands, Oct 15th 2017)
I will be meeting with international ME associations, support groups, patients and press/media to promote the need and put pressure on governments to fund biomedical research projects.
https://www.justgiving.com/mikeseumarathons/
You can also donate by texting IIME82 and £3 to 70070
Twitter: @mikesEUmaras
www.mikeseumarathons.eu
www.mikeseumarathons.blogspot.co.uk
Invest in ME are instigating a UK clinical trial hoping to mirror the so far successful results of the Rituximab Trial in Norway which has seen over 66% of patients make a significant improvement. In some cases returning to work and living symptom free for years.
They are also setting up a UK ME centre of excellence where patients can be properly diagnosed, treated and research projects can take place. There is no real govt funding towards finding a cure or effective treatment of ME. Invest In ME are voluntary run and all sponsorship goes to research projects not salaries (unlike some ME charities). If you know someone suffering with the illness, supporting the groundbreaking work by Invest In ME is the best way that you can help them.
Thanks for your support 🙂
mecentraal.wordpress.com 
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