Aug/Sept/Oct Update

I'm now halfway in my challenge to run a marathon in all 28 EU countries!  3 years done and 3 to go.

It's been an extremely busy last 3 months where I've run 3 marathons including my best ever and raised around £2000 for Invest In ME's biomedical research projects.

Here's my round up.....


Rituximab £520K Target Reached

Congratulations and thanks to everyone who has helped Invest In ME to hit their target for conducting their own Rituximab Trial.  The drug has recently finished Phase3 of it's double-blinded trial in Norway with the results due to be published in early 2018.  If this stage goes as well as the previous two it could provide a huge breakthrough in providing a significant improvement to some patients.  I can remember when we started the '92 challenge' in 2014 and the total was at £260K, fantastic effort to crowdfund such a figure from their supporters.


Lyrtas Interview

                                   

Some national press coverage in Lithuania!  Really grateful to Lina for her help following our Skype interview.  Initially it was meant for the Vilnius Marathon Facebook page so I was delighted to see it picked up Lyrtas and Vilniuje websites.


Bridgwater Half

The weekend before Vilnius Marathon I decided on the spur of the moment to run Bridgwater Half Marathon in Somerset.  It was torrential rain throughout but a flat course and cool temperature which allowed me to run my fastest ever race half of 1hr 44 mins, beating the previous best by 9 minutes!


ME in Lithuania

It was difficult to track down patients in Lithuania due to the language barrier but mainly because the illness isn't recognised by the health authorities there.  Thanks to my friend Juli, we were able to interview Aleksas who told me more about his experience of living with ME in Lithuania.

Click here to read.


Vilnius (#12 Lithuania)

On September 10th I ran my best race so far with a time of 3 hrs 55 mins beating Brussels last year by 3 minutes.  It was a hilly course in places but I felt good on the day and enjoyed the course and support from the locals.  Read my race report here


NICE & ME in the news

Good news as it's been decided that the NICE guidelines (effectively how ME is treated in the UK) will be soon updated.  Well overdue and whilst still not a guarantee of a change, it does show that the hard work and advocacy of patients and Invest In ME is starting to break through to the mainstream.

Daily Telegraph 
Daily Mail

Throughout the Summer, there were several pieces in national newspapers that appeared to show an appetite for changing or maybe just balancing their coverage of ME. Sadly there was still a lot of attention for the dangerous quack therapy peddled by Esther Crawley called the Lightning Process. 


ME in the Netherlands

I was very fortunate to collect 3 very different perspectives on life with ME in the Netherlands.  With thanks to Rob, Anil and Frank this article received the largest audience of any post on my site and was kindly shared by a number of Dutch patient groups.  Click here to read.


Anil Van Der Zee Interview

Anil interviewed me for his website which helped us raise quite a bit of sponsorship, you can read it here

South Bristol Voice

It was great to get a rare bit of coverage in my home town in September as the South Bristol Voice kindly published my story.  The editor Paul was very keen to help and learn more about the illness.  He told me that once he uploaded the story, one of his delivery staff told him they had ME -he had no idea.  Scroll through to page 29 to read.


'Business cards'

Another brainwave from my friend Ian!  Business cards to hand out when I get talking about the challenge.  They're credit card sized and fit well in my wallet, hopefully will bring in some donations!


Amsterdam (#13 Netherlands)

Amsterdam Marathon was warmer than expected but I got round fine just 5 weeks after Vilnius.  I really enjoyed the course of canals, bridges, parks and a fantastic stadium finish.  A very flat course that on a cooler day I think could have been another personal best but I was happy to get around without injuries in 4 hrs 1 minute.  Click here to read my race report.


Severe ME Blog - Meeting Anil

After the race in Amsterdam I was able to meet my friend Anil for a few minutes at his apartment.  It was great to see him and inspired me to write a short blog (so far 12,000 unique views).

Unrest

I went to watch 'Unrest' in Bristol shortly after my trip to the Netherlands.  The film was a very moving biographical account from Jen Brea of her struggle with the disease.  It has been shown all over the world, often onsite at hospitals where the aim is to encourage medical professionals and the public to understand the illness better.  There was also a showing in Parliament with MP's in attendance which I hope has helped to raise awareness and move ME up their agenda a little.

You can download and watch the film here


ME in Slovenia

At the 11th hour, we managed to find some patients in Slovenia to talk to about their experiences with ME.  You can read what they had to say here.


Ljubljana (#14 Slovenia)

Number 14 of 28 done.  It was a bit of a battle in truth as it came 2 weeks after Amsterdam.  My hips and quads were in trouble with 10 miles to go but I got round in a fairly respectable 4 hrs 20 mins.  It was great to be back in Ljubljana and I was fortunate to have 3 nights there.  Click here to read my race report.


ME Centre Of Excellence

                           

Next year sees Invest In ME's 'Centre Of Excellence' begin in the new Quadram building at Norwich Research Park - a huge and exciting milestone.  Info from the charity:

"Our overall goal is to fund a continuing foundation of biomedical research in a Centre of Excellence for ME which allows research hypotheses to be created and tested and facilitates and establishes further international collaboration in research - with an urgency that reflects the needs of this situation. 

International collaboration is not something that we have just discovered and promoted for the sake of looking good.  We have been publicising this need for many years and our international biomedical research into ME Colloquiums in London have been geared to establish, facilitate and promote this collaboration.

By maintaining a regular annual intake of new PhDs and post-docs we will enable real progress to be delivered and international collaboration and joint funding to be augmented.

The plan is to perform the UK rituximab trial - working with the researchers from Haukeland University Hospital Bergen to help make an effective and useful research project"


2018 plans

With 2017 races finished, I'm keen to get to 1000 miles for the year which means I'll be running over Christmas for the first time, training for Malta in February.

My current plan is....

#15 - 25th Feb - Malta (Malta)
#16 - 22nd Apr - Vienna (Austria)
#17 - 13th May - Copenhagen (Denmark)

#18 - 23rd Sept - Berlin (Germany) - If selected in ballot, find out early Dec
#19 - 14th Oct - Zagreb (Croatia) - depending on whether get into Berlin!

Running Pledge

I'm writing it down so I stick to it:

In 2018 I'm going to aim to run a PB (sub 3 hrs 55 mins) with 2 other sub 4 hour marathons and all 5 in under 4 hrs 25 mins. 


I'll also be...

• Aiming to run a few more local half marathons where hopefully I'll get to meet more supporters and patients to raise awareness.
• Organising and hosting a fundraising night in Bristol where I can update on my journey so far and use the 250 Pieminster Pies that they've kindly pledged.
• Attempting to reach mainstream UK media and running magazines as the challenge heads closer to the end.
• Working on ideas for my next challenge -important to have something lined up for when I finish!

Thanks again for all of your kind support, if you'd like to make a donation to Invest In ME's amazing research projects to find a cure for M.E then please visit:

www.justgiving.com/mikeseumarathons or text 'IIME82' and £1, £3, £5 to 70070

Total Sponsorship Raised: £9520
Social Media Followers: 1815
Miles Covered: 300
Average Temp: 20C
Lessons Learned: Will need to be better prepared for 2 races in a 3 week period next year!

May/Jun/July Update

11 down, 17 to go!

It's been a busy 3 months on the challenge where I've run my hottest/worst marathon, attended my first ME research conference and secured a donation of 250 pies from a national retailer....

Vienna Marathon (Number 16, April 2018)

I booked my 2nd marathon for next year which will be Vienna Marathon!  I passed through Vienna on my honeymoon and had 2 days to explore, it'll be great to go back to the city once again to run this race.

It's a big race in it's 34th year and last year over 42,000 runners all entered with the half, relay and full marathon runners all starting together.

Millions Missing (May 12th)

As with last year, May 12th is ME Awareness Day globally and more demonstrations/protests were held across the world to campaign for biomedical research and health equality from their governments.  The protests managed to get quite a bit of publicity, the best of which I thought was over in Dublin below....

Dublin Millions Missing Demo

There wasn't one in Bristol this time around but it was heartening to see Juli and our Polish support group involved with an online protest.  She's done some incredible work posting news in there and encouraging conversations, now up to 80 members and with an additional Millions Missing page too.

Maranoia

I wrote a quick blog piece about 'Maranoia'

Check it out here!  Maranoia Blog

#11 Luxembourg Marathon

At the start ahead of a super-tough race through heat, hills and tiredness.

Number 11 was an insanely hot (32C at race start) Luxembourg Night Marathon.  My first ever night marathon though in truth it didn't get dark (or cool down) until very late on.  It was a tough course with high elevation in the last 6 miles and it's fair to say that the heat definitely dismissed any chance of a tilt at my PB.

Next day traditional, steak, beer and medal pic

I got round OK though and enjoyed the fantastic support from the locals and the spectacular views on the course.

Full race report here: Luxembourg (#11)

Invest In ME Conference, London

Invest In ME kindly invited us to the annual ME conference in London and I thoroughly enjoyed the experience.

 Great to see Nancy van Hoylandt again from EMEA and the Belgian ME Association

I had a full sized banner next to the Invest In ME and European ME Alliance stands and it was great to meet so many of the amazing researchers and scientists that I have heard so much about.  It was good to meet so many people who have supported and followed the challenge so far too including Emma, Arnold, Helen, Kathleen, Richard, Tony, Nancy, Alice and others.

Loved having my own banner!

There was certainly a lot of positivity about the research underway to find successful treatments and with the likes of Professors Mella, Fluge, Davis, Cambridge and co on the case there's certainly reason to feel optimistic that things will improve soon for patients globally.

Cat took this fantastic pic of David Tuller tearing up the PACE trial

To buy the DVD which has full coverage of all the talks, please click here

Meeting Helle and Copenhagen (#17)

I met Helle Rasmussen and partner Keith after our '92 in 92' football stadium challenge for Invest In ME in 2014 and we met up again in Bristol in early June.  Helle does some great advocacy work in Denmark despite having ME herself and has always been a great supporter of my challenges for Invest In ME.

Meeting her again inspired me to shift my plans around and run Copenhagen as race number 17 next year.  I've booked flights and will be formally entering the race as soon as entries open soon.  It'll be my first trip to Denmark and I'm hopeful of meeting up with the Danish ME Association over there.

Sponsors and Pies

I wrote off to 15 businesses on my street in Bristol for help with the cost of covering flights, hotels and race entries to keep the challenge going.

I love Pieminster Pies!

I only had one reply, from Pieminster Pies who have kindly offered me up to 250 pies to sell at a fundraising event.  Just need to figure out what sort of event to put on now!

Frome Half Marathon 

I had 13 miles down on the training plan for Vilnius and under advice from my physio Martin, I hunted around for a good half marathon race to run it.  I found Frome and was surprised to see how hilly it was!  Being in July also I thought hills and heat would be great training for my autumn marathons.

Entry was a little over £20 and Frome is around an hour's drive from me which was great.  I had a nice message from Becky Hatfield whose daughter Eloise is wheelchair-bound with ME and she said that they'd be keen to cheer me on.  Becky's friend Sally who has M.E also came with Jay and it was great to have a chat with them all after the gruelling little course.

Anna, Me, Phil, Becky, Sally (front left), Eloise -my Frome fanclub

I got around in 1hr 53 which beat my previous half-marathon best (Bath, 2009, 1hr 56) and on a course with 4x the elevation too.  We got a cloudy day and almost perfect running conditions but it was valuable training and great to make new friends.

Flying

It occured to me that by the end of the challenge I will have taken 56 flights to 28 countries.  That's a lot of mileage, carboon footprint and take off and landings for someone who doesn't enjoy flying at all.  I'm ok once we're in the air although anything over 2 hours makes me fidget.  I can't sleep outside of my bed even when I'm at my tiredest or after a race so I usually read running biographies or listen to music.

It's amazing seeing the landscapes of the countries we pass over and land in.  I always have seat 7A -a superstition really, it's a window seat furthest forward on the plane without having to pay more per seat.  I tend to book my flights the day they get released to keep costs down but I've fallen foul of this recently as airlines can change the flight times making it impossible for me to make the races -had this recently with Vilnius and had to re-book a more expensive flight, grrr.

Most flights I'm OK but taking off and landings are my major problem.  Cat's hand gets squeezed very tightly.  I've never liked rollercoasters and avoid theme parks at all costs so the point at which the planes wheels leave the ground it's usually panic stations for me.

The biggest worry for me about this entire challenge isn't that I won't be able to run the marathons, it's that within 56 flights, it's likely that at least one will be severely delayed, cancelled or at my most pessimistic, crash.  It's the unfortunate part of living on an island that you need to fly everywhere to get anywhere.  I'm actively looking at a way of (non-financially) offsetting my carbon footprint somehow, if you have any ideas how to do this let me know!  The only ideas I have so far are to use the car/public transport less and walk more and stay meat-free (it takes a huge amount of energy to process meat).  Hopefully there's more I can do to limit my damage to the environment.

Vibro & Veggie

So with 3 races coming up over a 7 week period, it's essential that I'm at physical peak fitness!  I'm hopeful that the summer/warmer weather training will help me to hit a PB in the autumn races as it did last year and the year before.  October has always been my best month for running and I want that to continue as I aim to go under 4 hours for at least 2 of the remaining 3 races of the year.

          

It's important for me to feel that my running is progressing and that I'm getting better despite growing in age each year.  My aim is to drop 14lbs by the next race, which is a tough ask but possible if I stay disciplined (and anti-social), turning down beers/nights out and junk food.  In order to this I've decided to revert back to my vegetarian diet of earlier in the year.  I'm 4 weeks in now and finding it easy to stay meat free with no ill effects.

I've also bought a 'Vibro plate' -yes, I know it's a bit weird.  But I've read positive things about it from runners and it's proven to exercise the entire body.  Standing on it for 15 minutes on it's top speed is a very odd experience but it should help me tone and tighten muscles to enable me to build core strength and help with the latter stages of the races.  Hopefully I'll notice the difference soon!

Vilnius Marathon Interview

Perhaps a turning point for press coverage for the challenge, Lina from Vilnius Marathon dropped me a message and we had a skype interview.

Took a break from painting my lounge to talk to Lina

Waiting for it to be published but it was a pleasant surprise and she seemed very interested in M.E and hopefully we can raise some awareness in Lithuania.  I'm interviewing a patient there currently so hope to report back on their experiences living with the illness soon.

Autumn 

So next up is Vilnius Marathon on September 10th (number 12 of 28).  Unfortunately it's quite tricky getting to Lithuania so I need to change flights at Warsaw, hopefully I've allowed enough time.  I'll be flying back almost immediately after the race too as Cat needs to work on Monday, fingers crossed I'll get a shower first and that our flights aren't delayed!

I'm runner number 61 for this quirky 2 lap race around Vilnius

After that it's Amsterdam (Oct 15th) and then Ljubljana (Oct 29th), this will be a real test and it's vital I'm in peak shape to take on the challenge.  I've never done 2 in 3 weeks before so it's going to take a lot of physical and mental strength to get out of October in one piece.

Thanks again for all of your kind support, if you'd like to make a donation to Invest In ME's amazing research projects to find a cure for M.E then please visit:

www.justgiving.com/mikeseumarathons or text 'IIME82' and £1, £3, £5 to 70070

Total Sponsorship Raised: £7257
Social Media Followers: 1614
Miles Covered: 227
Average Temp: 18C
Lessons Learned: To keep reading, learning and asking for running advice.

Feb/Mar/Apr Update

Into Spring and I've ticked off number 10 of the 28 with a steady run in Barcelona (more on that in a bit).

Here's a quick summary of what's been going on since my last blog.

Hosting UK Runchat Hour

Way back in Feb I co-hosted UK Runchat Hour on Twitter.  The online running community have been really supportive to my challenge and in return I've been happy to give advice where I can to people training for marathons.

So from 8-9pm, I had some questions lined up for the followers of the community (52,000 strong).  It was a fast and furious hour but great exposure for Invest In ME as people were visiting my profile, website and asking questions about ME and the charity.


Polish ME Flyer

With our Polish ME Support Group on Facebook at 50 members, Kotki, Ian and I put together a flyer to help us grow membership and to get more conversations going.  The idea is that patients in Poland can print off the flyer at home and leave them at their doctors surgery or other public places to help spread word of the illness and group.

 

Juli (who helps run the group) has been amazing with her contributions and Poland now has an online protest and presence as part of Millions Missing's global action on May 12th (ME Awareness Day).  We've added another 15 members or so and hopefully it's a big step in the right direction.


Yorkshire Times

Good friend and ME sufferer Bill Clayton managed to get a feature on my challenge into the Yorkshire Times which was really nice of him.  The paper gets a big readership and it was great to see some followers added and donations coming through after this post.

Click on the link below to read it:
Yorkshire Times 


Care 4ME Conference (Brussels)

A week before I ran in Barcelona, Nancy Van Hoylandt (a long time supporter to my challenge and to Invest In ME) and Alice Vertommen, as part of the Belgian ME Association, organised a fantastic conference on ME at the European Parliament in Brussels.

Amongst the researchers there were Jo Cambridge, Olli Polo, Nigel Speight and Simon Carding.  Also in attendance was MEP Helga Stevens, more fantastic progress for the European ME Research Group and European ME Alliance.


Millions Missing Canada

Big thanks to Barbara Fifield and Lindy Bilyea for picking up my challenge and for very generous sponsorship.

Barbara has featured my challenge on the MillionsMissing Canada social media and I've had some really fantastic support over their side of the Atlantic.

Click here for article: MillionsMissing Canada


Petition For Parliament Debate

Finally an ME petition has hit it's target this month.  There's now over 10,000 signatures which triggers a response from the UK government into the continued neglect and mistreatment of people with ME.

If you haven't already, please do click on the link.  It takes 10 seconds and you won't get any spam through.  It's fair to say that the pressure is building on the UK Government to start taking biological research seriously and dump the ludicrous PACE Trial rhetoric.

Open until 3rd May


Barcelona Marathon

So if you missed it, I ran Barcelona on March 12th (4hrs 10) and we managed to raise over £1000 for Invest In ME in this race alone.

It was great to meet so many ME patients over there as well as being able to stay with Teresa over there.  It was a really well organised race and although it did get uncomfortably hot towards the end, it was a decent start to the year and I'm sure I'll get faster.

Well done to Ben (right) for getting round under difficult circumstances and raising lots of money for Invest In ME also!

Full race report here

UKRunChat Charity Feature

Every Tuesday, UK RunChat select two runners to feature and I was really happy that they were able to publish a piece on my challenge. It went out on Facebook, Twitter and Instagram (60,000 followers in total).  Love those guys.

Click here to read article:  Charity Tuesday

Haywards Heath Run

I love running in new places.  I enjoy switching between my 3 usual Bristol long runs but getting out on the roads and trails in a new town seems to make the running less painful.

Ouse Valley Viaduct

I got out for a 15 mile morning run in the sun from Haywards Heath to Balcombe and then back through Cuckfield.  It got a little hairy sharing the road with the traffic but it was a really enjoyable run and some very pictureque views.

Luxembourg ME Interview

With a population of 500,000 I thought it would be incredibly unlikely to find someone to interview from Luxembourg (next race) about their struggle with ME.  Big thanks Robyn James for searching groups and to my friend Juli for finding Katja in one of the German groups on Facebook.  Katja's story is uncomfortable reading but it's important that people understand what patients are going through and what it's like in Luxembourg for sufferers of ME.

Since publishing last week it's had over 1000 views already.  My goal is to try to reach other patients there and put them in touch with Katja.  I've also contacted Luxembourg Marathon and some local press there to see if we can raise awareness for people with ME living in Luxembourg.

Click here for the article: http://www.mikeseumarathons.eu/luxembourg.html

Luxembourg, hills and the one-speed gearbox

I've read a fair few reviews about Luxembourg Night Marathon.  It's fair to say nearly everyone who has run it says that it's not a PB race.  There's a 15 mile or so decline (great!) followed by a steep drop into a valley/ravine and a reverse back up it for the final 11 miles.  Ouch.  As a result I've been running up and down what I consider to be one of the steepest hills in Bristol, Bridge Valley Road.

The road meanders up from the Portway underneath the famous Clifton Suspension Bridge up to Bristol Zoo.  It's a 0.5km route which tests almost every part of your body.  I'm running up it 2-3 times every Tuesday through the car fumes, prevailing head wind and, on hot days, sweat fest that it brings.  Mixing in some higher altitude long weekend runs and a faster flat Thursday 7 mile sprint with intervals, I'm hoping this will get me ready to get round the course in a passable time.

Any thoughts of sub 4hrs have gone out of the window.  It's a shame as I don't have another marathon after this until Lithuania in September but I know it's unrealistic for me to post a quick time out there on such a challenging course.

Big hill!

I'm still only 2 years into the challenge and running as a whole really.  So far I've only really had one-speed, I seem incapable of running slower on my long runs and find it difficult to run faster on the short ones.  The answer to this is more of what I'm now doing with intervals and hills (and good diet). I seem to be able to get around 22 miles in 3 hours but fall apart soon after in most races.  So this time around I'm going to find that elusive steady pace to last the full 26.2m, sounds easy doesn't it.  

2018 Rough Plan

I'm always tweaking the plan for future marathons as the dates of the races (and my availability) does change a fair bit.  I've got to be ready to book flights as they get released to keep costs down, in this challenge it definitely pays to be organised!

Only 3 years left!

I've booked flights for Malta as the first one of 2018, actual registration for the race doesn't start until October 1st.  I've never been to Malta and it looks like a fantastic place to run.  Once again I'll be flying back to the UK a couple of hours after the race (eeek) and then driving home to Bristol from London but I'm just grateful I can make the flights work and actually get out there.

So just under 4 weeks to go now until Luxembourg Night Marathon.  I've been training hard with hill and sprint work, hopefully I'll be ready.  It's definitely not a race to run my personal best.  I'll be flying over at 6am on the morning of the race, can't check in to our hotel until 2pm and then the course itself has a 10m incline to finish.  Getting through in one piece is the priority for this one!

If you'd like to sponsor me for what looks like my hardest of the 28 races then please click on the link below!

www.justgiving.com/mikeseumarathons or text 'IIME82' and £1, £3, £5 to 70070

Total Sponsorship Raised: £6425
Social Media Followers: 1516
Miles Covered: 280
Average Temp: 12C
Lessons Learned: Change up the training with hills and sprints