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Monday, 3 August 2015

July Update

Just two weeks to go until Helsinki and I've had a busy old month, with 101 miles covered and many more travelled in order to ge myself ready for August 15th.


                                                        Reykjavik running

I've been on some great runs this month and lucky to have had some amazing scenery in both South Wales and Iceland.  Running along the coast from Reykjavik was incredible and I went for 2 hours of my 3 hour run without seeing a single soul.  It was great training for sure even though at 13C it was a lot cooler than I can expect to find in Helsinki.

Laugharne Castle, South Wales

Quick thought that occurred to me recently whilst out running.  I approached Men's Running to see if they'd be interested in doing a feature but unfortunately it wasn't quite impressive enough to get any column inches -fair enough I thought as I know of some fantastic and seemingly impossible challenges out there.  They said to get back in touch when I was about halfway through my planned 28.  This could be 2-3 years away and that got me thinking why I can't get more marathons under my belt and get the challenge done quicker.

The main barrier is affording flights, accommodation and trainers.  Can I do 8 or 9 in a year?  Yep probably, I certainly feel fit enough.  Getting corporate sponsorship (and donations to ME research) is proving tough as we face stiff competition from bigger and often more well-known charities.  It's frustrating in many ways to see all the promising news come through about the Rituximab trial and still see governments refusing to help speed things up with funding.  Explaining ME to someone who doesn't know anyone with the illness is something which I know is challenging for everyone trying to raise awareness or change attitudes.

As I'm self-funding the trips at the moment I thought there was some ironic symmetry between the challenge and the quest to find effective ME treatments.  In both cases the only barrier that I can see is money.  Both are very possible, indeed, hugely likely.  But it's almost right that my road to the finish should be a longer one than it could be, as with ME sufferers who wait with frustration but hope that effective treatment is on the way.

Chilli ME Challenge

This month I decided to literally bite the bullet and do the fantastic Chilli ME Challenge for Invest In ME.  The idea is to create a stir similar to that of the ALS Ice Bucket Challenge from last year but to raise the profile of ME and the need for research.

It's a fantastic initiative that has been gathering loads of both funny and poignant videos and gives the participant the chance to nominate friends/family to take the challenge once they themselves have munched on super hot chillies.

For more info check out: Chilli ME Challenge

Anyway here's my contribution and my good buddy Ian (who has ME), thanks to those who've fulfilled their nominations and pledged/shared.

My Chilli ME Challenge
Ian's Chilli ME Challenge

BBC Radio Bristol

Not quite July but keen to pop this on here before I head off to Finland.

At BBC Bristol!

So I was invited to come and talk to John Darvall on BBC Radio Bristol about the challenge and Invest In ME.  John has already featured 2 discussions about ME and generously given up a lot of time to talk to sufferers and fund-raisers.  He recently found out that his step-sister has the illness and is keen to raise awareness and learn more about biomedical research projects.

John Darvall (left), BBC Radio Bristol Presenter and supporter of ME research

Having given the Action For ME charity a platform previously I was very keen to accept his invitation to let the people of my home-town know more about the Rituximab Trial and Invest In ME.  Not everyone with ME knows of the excitement surrounding Rituximab, I know that if I had the illness and wasn't aware of the great work that Invest In ME are doing then it would lift my spirits and give real hope.

Interview starts at 2hrs 11mins, click here to listen

ME in Finland

So as part of my challenge I'm keen to find out more about what it's like to have ME if you live in each country I visit.  I got in touch with the Finnish ME Association for more info, click on the link below.

ME in Finland

So next month I'm hoping to report that I've ticked Finland off the list successfully and that we've raised a little bit more money and awareness for Invest In ME and ME sufferers.  I'll be taking a week off training to recover, eat pie and drink cider then it's all eyes on Dublin at the end of October.

I'll also be booking flights, accommodation and grabbing a ticket for my first planned marathon of 2016!

Thanks again for your support, flicking through my Facebook/Twitter I've had some really nice messages, most from people I've never met which is just fantastic.

Catch up on the other side!

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