Discussion in 'General ME/CFS News' started by Andy, Nov 26, 2017.
Nice one Mike - and I think that the work you've done raising awareness is much more valuable, even as someone who is generally deeply sceptical of the value of 'raising awareness'. You've managed to get quite a few articles (and many more blogs) published around raising pertinent issues, like PACE, that would normally get overlooked. Thanks for all you work.
Thanks Esther. Raising awareness is tough from what I've experienced so far. I've had lots of promises from people to publish but maybe only 1 in 4 people follow through on their promises. It's nice to raise money but a lot of the time I feel like I'm just taking money from patients and their families as the illness is so misunderstood in the mainstream/public eye, those kind of donations are rare. If it was about money I'd just donate the cost of training, flights, race entries, lost income etc (well over what I've raised so far) and just hand it over, but I have to believe that every like/share/one persons attitude we change, the closer we get to a cure/effective treatment. If I lost hope of that I'd stop doing this and just set up a direct debit. I hope it's making a small difference but who knows, it's such a massive task to get attention from anyone nevermind effect any real progress.
I'll keep going as I owe it to everyone I've met virtually and in person, hopefully by the time I've finished in 2020 the landscape will have changed for the better a little.
@Mike Harley thank you so much, what you're doing is incredible! W00t!!
"Man Who Runs Across Europe To Raise Money For ME Headed To Malta's Marathon
He's been running ever since his friend was diagnosed with the disease
Over 4,800 people applied for the Malta Marathon - but for one man from the UK, this marathon is much more than a test of his endurance.
It was ten years ago when Mike Harley's best friend Ian was diagnosed with Myalgic Encephalomyelitis, or M.E.
Since then, Mike's life has never been the same: "Ian has been unable to work or lead a normal life; this is the only way I feel I can help him, by running marathons," said Mike."
Nice post from Malta Marathon last weekend.
Longer version and more pictures on Facebook:
Well done @Mike Harley
Here's my Malta Marathon race report....
6 weeks tomorrow I'll be taking on No. 16 in Vienna, Austria!
Could someone translate a German text for Mike's website into English? He interviewed two Austrian pwME prior to the marathon in Vienna/Austria in April. It's about 2 pages and not a lot of text. The questions are in English, just the answers need translating.
Send it to me via PM. Is there a deadline?
Thank you so much! Sent you a PM with the two documents.
Thanks so much @TiredSam
I have one final one to translate, would it be asking too much to send that too? Looking to publish in 1-2 weeks if possible.
Yep, send it along. I'll set myself the deadline of getting them all to you by the end of the weekend.
@Mike Harley @Joh
Amazing, thanks Sam.
I'll be in Copenhagen at the MillionsMissing protest on May 12th the day before running Copenhagen Marathon.
Thanks to the Helle Rasmussen of the Danish ME Association for putting me in their February magazine.
I'll be meeting with patients and doing my best to help raise awareness there and obviously doing anything I can to help out the organisers of the demo in Bristol.
Hi all, sorry, me again.
I'll be running Devizes Half Marathon in Wiltshire on Sunday April 8th for Invest In ME as training for my next marathon in Vienna (Apr 22).
If you'd like to come cheer me on and be in a photo (hoping to have local media there) then please let me know. I'll be finishing on 'The Green' in Devizes at 11.20-11.30 and will be there with my big flag eating chocolate somewhere.
I have a facebook event page where you can let me know if you're coming:
Otherwise, if you're feeling generous you can help support biomedical ME research at www.justgiving.com/mikeseumarathons
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