An Ally for the Long Run. Literally.
Guest writer Mike Harley. A story of friendship, advocacy, and perseverance.
Guest writer, Mike Harley, shares his incredible story of being an ally and advocate for his friend—and the entire ME/CFS community. Thank you, Mike!
My name is Mike, I live in Bristol in the UK and for the last 9 years I’ve been raising money and awareness for biomedical ME research.
One of my best friends, Ian, has had ME for many years and after speaking to him about the illness (which I knew nothing about initially), I decided to see if I could help. He told me that ME didn’t have a cure (or a treatment), which I couldn’t really comprehend, but there was a science-focused charity in the UK, completely volunteer run, that puts every penny into trying to find treatments/cures.
In 2014, with 3 friends (including my wife) we embarked on our first project, which was to visit all 92 English Football League Stadiums (over 2000 miles driven in 5 days) meeting players and people with ME along the way. We focused on raising awareness by featuring in-matchday programmes, selling items at auction, and doing tv & radio interviews. We had an amazing time, lots of people with varying levels of ME came out to support us at the stadiums. The challenge reached thousands of people and was featured in over 70 publications raising around £4000.
In 2015, I decided to start a bigger, longer-term challenge. I had run a marathon back in 2001, when I was 18, and wondered if I’d be able to run another one. The success of engaging with football fans and ME patients across different cities in the UK got me thinking that to truly raise awareness in and outside of the ME community, I needed to visit lots of places again. I’ve always had a love for travel and had been really fortunate to get around Europe a lot through my 20’s, so I looked at doing multiple marathons in multiple countries around Europe. When I discovered that not all of the 44 recognised countries had marathons, I looked at the European Union and each of the 27 (then 28 before the UK left) nations had a marathon race, so the challenge was set—a marathon in all 27 EU countries to raise awareness and funds for Invest In ME!
I couldn’t find anyone online from the UK who had ever taken on the challenge, which felt exciting. Only problem was, I couldn’t run to the end of my street without struggling! I hadn’t run anywhere for years and had no idea how to train for a marathon—but I did. After 5 months of steady training, I flew to Prague for the first race of the 27 race/country challenge. I met the family of someone with severe ME while there, and people from the Czech Republic ME association came to cheer me on. It was an amazing trip and memorable first race, and a theme that would be repeated throughout the next 7 years.
My races:
#1 - Prague, Czech Rep - May 3rd 2015
#2 - Helsinki, Finland - Aug 15th 2015
#3 - Dublin, Ireland - Oct 26th 2015
#4 - Thessaloniki, Greece - Apr 3rd 2016
#5 - Stockholm, Sweden - Jun 4th 2016
#6 - Gdansk, Poland - Aug 15th 2016
#7 - Brussels, Belgium - Oct 2nd 2016
#8 - Toulouse, France - Oct 23rd 2016
#9 - Barcelona, Spain - Mar 12th 2017
#10 - Luxembourg, Luxembourg - May 27th 2017
#11 - Vilnius, Lithuania - Sept 10th 2017
#12 - Amsterdam, Netherlands - Oct 15th 2017
#13 - Ljubljana, Slovenia - Oct 29th 2017
#14 - Malta, Malta - Feb 25th 2018
#15 - Vienna, Austria - Apr 22nd 2018
#16 - Copenhagen, Denmark - May 13th 2018
#17 - Tallinn, Estonia - Sept 9th 2018
#18 - Sofia, Bulgaria - Oct 14th 2018
#19 - Paphos, Cyprus - Mar 17th 2019
#20 - Bratislava, Slovakia - Apr 7th 2019
#21 - Riga, Latvia - May 19th 2019
#22 - Budapest, Hungary - Sept 29th 2019
#23 - Bucharest, Romania - Oct 13th 2019
#24 - Porto, Portugal - Nov 3rd 2019
#25 - Hamburg, Germany - Sept 12th 2021
#26 - Zagreb, Croatia - Oct 10th 2021
#27 - Rome, Italy - Mar 27th 2022
I was originally aiming to raise £26.2K for Invest In ME to reflect the 26.2 miles in a marathon. I found that I got to that figure with 7 or 8 races left to go! So, I changed my goal to £42,195 to mirror the 42.195KM in a marathon.
It was an adventure with loads of highlights. I ran my best race in Lithuania, my worst in Latvia. I was invited to a fantastic rooftop barbeque in Barcelona and went on brilliant post-race boat trips in Thessaloniki, Helsinki, Gdansk and Toulouse. I took part in a Millions Missing protest in Copenhagen, nearly got arrested in Zagreb for a picture with my big flag outside St Marks Church, ran through a lantern village at Luxembourg Night Marathon and met my friend Anil at his home in Amsterdam (more from Anil here).
I ran in driving rain (Dublin, Zagreb) and heatwaves (Vienna, Bucharest, Riga, Paphos). After 7000 training miles and 26 races I finished the EU in Rome with family and friends who had flown out to cheer me home and we hit the £42,195 target over dinner after the race, which felt amazing. I managed to get interviews across Europe in local papers and had features on BBC Radio and Runner’s World which highlighted the need for biomedical ME research. I ran 7 local half marathons in the UK as part of training and got more news features and fundraising in—as well as meeting more ME friends. I was given handwritten cards, Finnish vodka, Dutch tulips, mugs, magnets, knitted woolly socks and chocolates from people with ME that I met and have remained good friends with.
I’ve gone on to run 3 more marathons for Invest In ME so far (Liechtenstein, Florence, Bergen) where I’ve met ME friends and visited Haukeland University to meet the scientists trialing drugs to cure ME. I have plenty of races left to run and am looking forward to reaching £50K for the cause soon.
Next up for me is Lucerne Marathon (Switzerland, country no.30) on Oct 29th -voted the most beautiful marathon in Europe.
Miles Rune to Date: 7,237
Raised for Invest in ME: 47674
To read more about the challenge: www.mikeseumarathons.eu
To support and sponsor my runs for biomedical ME research: https://justgiving.com/fundraising/mikeseumarathons
Mike runs for those of us who no longer can. He’s an ally and a hero!
If every person with ME had just one friend or loved one willing and able to raise awareness about ME/CFS, we would slowly begin to bring this disease out of the dark ages and into the light. If you’d like to highlight your ME advocacy here on the blog, please drop me a line!
What a great friend! Most people with ME lose their friends when they can't go out with them anymore. It's really encouraging to hear a story like this about a friend who really looks to raise awareness.