Mike's EU Marathons

[Chandelier]

Hi all

I'm 4 weeks away from running Reykjavik Marathon, Iceland.

I've interviewed 2 people with ME there and they had some very interesting things to tell me about life with ME there...

https://www.mikeseumarathons.eu/iceland.html

This is really cool, thank you, Mike!

I see you did a ton of interviews with pwME all over Europe.
Has there been an interview that for some reason stood out as distinctly different than the others?
And is there one that you still think about from time to time?

 

[Mike Harley]

This is really cool, thank you, Mike!

I see you did a ton of interviews with pwME all over Europe.
Has there been an interview that for some reason stood out as distinctly different than the others?
And is there one that you still think about from time to time?

Thanks so much for reading this and the question, I rarely get any feedback or q's so this is really cool for me.

As you can tell from the interviews, it's a familiar feeling all over Europe. I can tell you of a few things that have stuck out in my mind over the last 12 years of meeting and interviewing people around the continent.

A lot of people I've chatted to are understandably desperate and scathing of their govts/health authorities. Malta stands out as one. I interviewed some people and published their full names, the ME Association there got very angry with me and thought I had betrayed them which was a hard one to take. I didn't realised that they were potentially being spied on by their governments and could be denied access to benefits for what they shared. Lesson learned.

A lady I spoke to in Poland passed away a few years later and as I was early into my challenge, it really affected me. She was so candid about her struggles and completely ignored by doctors. I think about her a lot. I met her sister before Prague Marathon (my first of the challenge) and it had a big impact that drove me on in the race. I set up a Polish ME community facebook group in 2016 which now has over 1000 members and they're starting to mobilise and take action. Beyond the running, this is probably my proudest achievement.

There was a guy in Greece that I interviewed. He couldn't find a single person in the whole of Greece with ME to talk to. I tried for weeks to help him but couldn't find anyone either. Given the size of the country and population, I couldn't believe how difficult a challenge this was.

I met Anil Van Der Zee immediately after the race in Amsterdam. It hit me so hard I wrote a blog about it which I circulate every now and again to people who don't know about ME. https://mikeseumarathons.blogspot.com/p/when-well-person-meets-someone-with.html

I met a guy in Montenegro for a coffee and I've been pushing him to start a community, though he's ill himself and has a newborn.

Sorry, that was a bit of a brain-dump. I could talk all day about this but hope that answers the q a little

 

[Chandelier]

As you can tell from the interviews, it's a familiar feeling all over Europe.

I mean we’re used to that this is the normal but if you think about it it’s such a gruesome and crazy state of affairs and it replicates all over Europe!!

I didn't realised that they were potentially being spied on by their governments and could be denied access to benefits for what they shared. Lesson learned.

A lady I spoke to in Poland passed away a few years later and as I was early into my challenge, it really affected me.

How sad, so much injustice.

There was a guy in Greece that I interviewed. He couldn't find a single person in the whole of Greece with ME to talk to. I tried for weeks to help him but couldn't find anyone either.

We should pick up that challenge again!
Ain’t there a single S4ME member from Greece?

I set up a Polish ME community facebook group in 2016 which now has over 1000 members and they're starting to mobilise and take action.

What a cool and unexpected achievement!
That means free Pierogi whenever you’re in Poland?

---

I‘m quite intrigued by the contrast that you bring as an uber-able marathon runner that advocates for ME.
There are probably a lot of people out there that don’t care about ME but who would lend their ears to you while doomscrolling social media.

I really like the idea of collecting all these interviews on a map.
It’s like souvenirs to cherish, it somehow also reminds me of 80‘s Indiana Jones?
Have you ever experimented with expanding your advocacy by bringing in a touch more entertainment?
Let’s say that for every place and every person that you interview, there would also be a little mission, a litte adventure involved to make a person‘s life a little bit brighter.

Example: Veronica, pwME – Madrid, Honululu
Veronica has cats and she would love to have some cat furniture for the walls so that the cats have an enlarged habitat to roam in.
Now you come into play and you do your normal general fundraiser but as a specific goal for that place you also raise money to help fulfill Veronica‘s wish.

So in addition to having a map of general good deeds, you start to add very specific good deeds to each encounter.
Specific good deeds are much easier to translate into an engaging story.
For this example, you could start with an interview with Veronica where we learn about her life and her wish.
On a second visit you could then order/build/install the furniture, depending on your time constraints.

Of course this would go much more into the entertainment realm than what you are currently doing.
However, it could also be a mean to decouple your advocacy from marathon running in the future.
This would prevent your advocacy engagement from coming to a halt when you’re injured.

I don’t know if you would like that but I for one would love to watch it!
If you can generate more attention, more money could be raised and if you can achieve that simply by adding one tiny but specific good deed that would be really cool.

 

[Felis Catus]

We should pick up that challenge again!
Ain’t there a single S4ME member from Greece?

@YiannisK do you know anyone with ME/CFS in Greece?

 

[Hutan]

There was a guy in Greece that I interviewed. He couldn't find a single person in the whole of Greece with ME to talk to. I tried for weeks to help him but couldn't find anyone either. Given the size of the country and population, I couldn't believe how difficult a challenge this was.

Checking our organisations list, we don't have an ME/CFS group in Greece.

Long Covid Greece - Long Covid Europe member

There is a Long Covid group though, maybe it would help the man find people going through something similar to him?

 

[Hutan]

A lady I spoke to in Poland passed away a few years later and as I was early into my challenge, it really affected me. She was so candid about her struggles and completely ignored by doctors. I think about her a lot. I met her sister before Prague Marathon (my first of the challenge) and it had a big impact that drove me on in the race. I set up a Polish ME community facebook group in 2016 which now has over 1000 members and they're starting to mobilise and take action. Beyond the running, this is probably my proudest achievement.

It is a substantial achievement, well done. We have a Polish Facebook group on our organisations list, I assume it's the same one. That is the only ME/CFS group we have listed for Poland.

 

[NelliePledge]

Yes it is Mike gave me some help when I was tracking groups to contact about Cochrane

 

[Rick Sanchez]

Very cool and good that you're still doing this!!

Crazy it's been 8 years (I think?) since you ran in Copenhagen. I remember meeting you at the Danish millions missing event.

 

[ahimsa]

Thank you @Mike Harley for sharing those memories from your past interviews.

I'm so touched every time I read about another one of your marathons. Thank you for continuing to do these runs and for posting about them here!

My brain has so much trouble remembering *anything* - this forum is one place that I remember to visit so I can keep up with ME/CFS related info.

 

[Mike Harley]

I mean we’re used to that this is the normal but if you think about it it’s such a gruesome and crazy state of affairs and it replicates all over Europe!!


How sad, so much injustice.


We should pick up that challenge again!
Ain’t there a single S4ME member from Greece?


What a cool and unexpected achievement!
That means free Pierogi whenever you’re in Poland?

---

I‘m quite intrigued by the contrast that you bring as an uber-able marathon runner that advocates for ME.
There are probably a lot of people out there that don’t care about ME but who would lend their ears to you while doomscrolling social media.

I really like the idea of collecting all these interviews on a map.
It’s like souvenirs to cherish, it somehow also reminds me of 80‘s Indiana Jones?
Have you ever experimented with expanding your advocacy by bringing in a touch more entertainment?
Let’s say that for every place and every person that you interview, there would also be a little mission, a litte adventure involved to make a person‘s life a little bit brighter.

Example: Veronica, pwME – Madrid, Honululu
Veronica has cats and she would love to have some cat furniture for the walls so that the cats have an enlarged habitat to roam in.
Now you come into play and you do your normal general fundraiser but as a specific goal for that place you also raise money to help fulfill Veronica‘s wish.

So in addition to having a map of general good deeds, you start to add very specific good deeds to each encounter.
Specific good deeds are much easier to translate into an engaging story.
For this example, you could start with an interview with Veronica where we learn about her life and her wish.
On a second visit you could then order/build/install the furniture, depending on your time constraints.

Of course this would go much more into the entertainment realm than what you are currently doing.
However, it could also be a mean to decouple your advocacy from marathon running in the future.
This would prevent your advocacy engagement from coming to a halt when you’re injured.

I don’t know if you would like that but I for one would love to watch it!
If you can generate more attention, more money could be raised and if you can achieve that simply by adding one tiny but specific good deed that would be really cool.

Thanks for the above, really interesting idea! I'll give it some thought. I guess what people might not know is that I have 2 young daughters and can't be away from home for long on these trips. I live in Bristol in the UK and nearly always have to travel 2-3 hours to London to get a flight out of the UK. Often I arrive, have 1 day to myself, I run the race and then fly home. It's a logistical challenge in itself. I also self-finance and never take money from IiME or donations so I can only afford 2 races per year really.

The 1 day that I usually have pre-race out in a country is spent doing interviews (TV, Radio) or meeting people with ME (where possible). In Reykjavik I'll be meeting with their ME Association and likely to have multiple radio interviews to get our message out.

I try and post lots on Instagram and facebook when I arrive. I'm naturally an introvert so have to really push myself! Sometimes if I'm struggling in a race or get bored I do a live video or two.

 

[Mike Harley]

Thank you @Mike Harley for sharing those memories from your past interviews.

I'm so touched every time I read about another one of your marathons. Thank you for continuing to do these runs and for posting about them here!

My brain has so much trouble remembering *anything* - this forum is one place that I remember to visit so I can keep up with ME/CFS related info.

Thanks so much for the lovely comments

 

[Mike Harley]

Very cool and good that you're still doing this!!

Crazy it's been 8 years (I think?) since you ran in Copenhagen. I remember meeting you at the Danish millions missing event.

Yep that's right! I loved my trip there and it was great to be involved with MM

 

[Mike Harley]

It is a substantial achievement, well done. We have a Polish Facebook group on our organisations list, I assume it's the same one. That is the only ME/CFS group we have listed for Poland.

Yep that's the one. I have some fantastic Polish volunteers moderating, the success of the group now is all down to them really.

 

[Mike Harley]

Checking our organisations list, we don't have an ME/CFS group in Greece.

There is a Long Covid group though, maybe it would help the man find people going through something similar to him?

Thanks, I'll check this out. I think mostly the issue is the language barrier/different alphabet.

 

[Chandelier]

I guess what people might not know is that I have 2 young daughters and can't be away from home for long on these trips. I live in Bristol in the UK and nearly always have to travel 2-3 hours to London to get a flight out of the UK. Often I arrive, have 1 day to myself, I run the race and then fly home. It's a logistical challenge in itself. I also self-finance and never take money from IiME or donations so I can only afford 2 races per year really.

The more I learn about you and your project the more I am impressed!

I'm naturally an introvert so have to really push myself!

Oh dear, not all heroes are wearing capes!
Are TV and radio interviews the worst?

Wouldn’t it be cool if we managed to take a recurring activity that costs you lots of energy as an introvert and replaced it with something that gives you tons of energy while also having the potential to reach even more people?

I‘m trying to come up with some small activity that would bring you joy.
Something that you can see on your map years later that would make you feel proud in itself.
Something small enough that it could take the place of a personal interview. Instead, the journalists would meet you to report about it.
The focus would then be on the action that you’re doing in the moment, not so much on you. Would that be a relief?
Something that you could do as a series.
Something where people get into a habit of "Mike‘s in town, he did a xyz, let’s see how it turned out".

If that sounds like an interesting avenue to brainstorm about, there are so many brilliant people here, I‘m sure the S4ME hive mind could come up with something simple, yet fun and worthwhile.

Do you have any special talents apart from marathon running?
Please don’t tell me you’re in IT!

I try and post lots on Instagram and facebook when I arrive.

Is that a task that you would prefer to delegate to someone else if possible?

 

[Chandelier]

Thanks for the above, really interesting idea!

TLDR: Have you ever been interviewed during a marathon? Could this become your new trademark?
Cooperating with Adam for social network reach.

---

I just had a short break from laying in my bed and boy did my imagination go completely bonkers again!
But hear me out, maybe there’s something to it:

What you need (but don’t know yet) is
Eddie, the truth bomb spitting, grumpy old bedside guardian of all pwME™.

In The Catcher in the Rye, the catcher saves adolescents from taking a wrong turn in the rye field.
Your Eddie guards pwME from bps monsters that try to hide under their beds.

Let’s get a bit more practical:
Instead of running one day and giving interviews on another one, you could make it your trademark to be interviewed only during races.
For that you would need some sort of construct that holds your phone camera into your face.
Of course, you could use your arms for that but I strongly feel we should take advantage of the fact that you are British and make this construction/camera holder/helmet as hilarious as possible.
Now on top of that bare wooden construction you‘d have Eddie, the truth bomb spitting guardian monster, built.
He should look super fluffy so that kids get really excited when they see it… like Sulley from Monsters Inc or maybe like a troll by Lidberg?
Let’s be realistic, it’s gonna turn out like a hideous nightmare abomination of that initial idea, but hey, that’s my fantasy and as a Brit I‘m sure you can rock anything!!

I don’t know how ambitious you are and how important the placement is for you, though?
Would it be possible/legal to setup a specific place on the race route where you could pickup and wear your Eddie camera helmet construction thingy and do an interview while running for a bit?

---

Another idea:
Maybe you could cooperate with Adam on the social media side of things?
He’s got a ton of followers:

Thread 'Broken Battery Updates'

Mar 4, 2026

I think it makes sense to create a thread for @Adam pwme ’s Broken Battery content.

His documentary about "the greatest medical scandal of the 21th century" has almost 210,000 views on YouTube.
Apart from that, he often makes relevant posts on his socials and he‘s also a diligent archivist of TV reports about ME/CFS.

• Chandelier
• Replies: 83
• Forum: Resources

• 

I‘d assume that a live interview about ME/CFS during a marathon – even without any costume shenanigans – would already be something that could go viral?

 

[Chandelier]

ME/CFS Science on Bluesky:

---

1. August 2026
Shoutout to Mike Harley, aka Marathon Mike.
He has been running marathons in every European country to raise funds for ME/CFS research.
Along his trips, he interviews ME/CFS patients to learn more about the situation in their country.


Ahead of his trip to run the Reykjavik Marathon on August 22, Mike interviewed two people who share their experience with ME/CFS in Iceland.
These interviews are an interesting way to learn more on how ME/CFS is treated and viewed across Europe.

www.mikeseumarathons.eu

Mike started running in 2015 because a friend suffers from ME/CFS and he wanted to do something to help.
He has now run 10.000 miles including 38 marathon and 11 half-marathon races for charity.
An incredible achievement and dedication!

Mike is collecting funds for the Invest in ME charity and has already raised £53,043 in total.
You can support and sponsor him using the following link:
Mike Harley is fundraising for IiME

In a recent blog post Mike explains that he will continue running because the situation for ME/CFS patients remains dire.

I’m sad and angry about it. It fuels my runs. For the last 4 years I’ve dedicated every single run to someone with M.E.

10,000 miles

I find it hard to fathom how heartless, cruel and ignorant governments around the world are when it comes to people with M.E. People are having their social media accounts spied on, benefits withdrawn, some have been forcibly removed from their homes, abused in hospital...

I’m not stopping. I love that people occasionally choose M.E charities to do sponsored events for but often it’s a one-time thing. I’m here for the long-haul.

 

[Mike Harley]

Evening all, I got round in one piece! Thanks for all the messages.

Race report for anyone interested, I got some nice pics of Iceland in there

REYKJAVIK, ICELAND

I arrived in Reykjavik for marathon 40 in my 36th country after a tricky build up. I couldn't train for 5-6 weeks with a freak rib muscle injury and my knees were both still very sore and...

www.mikeseumarathons.eu

Not sure where I'm going next Spring, will let you know!

 

[SugarSquared]

Evening all, I got round in one piece! Thanks for all the messages.

Race report for anyone interested, I got some nice pics of Iceland in there

REYKJAVIK, ICELAND

I arrived in Reykjavik for marathon 40 in my 36th country after a tricky build up. I couldn't train for 5-6 weeks with a freak rib muscle injury and my knees were both still very sore and...

www.mikeseumarathons.eu

Not sure where I'm going next Spring, will let you know!

Congrats on your 40th marathon! Impressive that you managed to stay under 5 hours despite the battering of rain.