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For main website please visit: www.mikeseumarathons.eu

Sunday, 30 April 2017

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


Monday, 6 February 2017

Nov/Dec/Jan update

Relatively quick update after my post-marathon hibernation of late last year!


I'm back running again and 5 weeks into Barcelona training having had some very quiet running weeks of no more than 10 miles per week for a couple of months.  Last October's two marathons in 4 weeks took a lot out of me mentally and physically so it was good to power down and catch up with friends and family.

I tried not to stop running altogether as I remember only too well how hard it was to get going again after my injury-plagued January last year.  But with a race more than 4 months into the future, it was hard to get out there and run just for the fun of it; something I've always struggled with.



So what have I been doing?

Well, I've entered two more races for 2017, taking my total to 5 again.

And they're both in October again, and only 2 weeks apart, eeek.



Number 13(!) will be Amsterdam on October 15th followed by Ljublana on the 29th which will take the challenge to the halfway point (14 of 28).  Why am I doing 2 in one month again?  Quite simply, because I have to.

The schedule of races is such that nearly all the countries I need to run in have October races as it's optimum weather (not too hot/wet/cold).  What results is an insanely complicated logistical challenge to try to fit in 5 across the year when I can't be in two places at once.  I don't want to be left with lots of October races that land on the same day so to get the challenge done by 2020 this is what I need to do.


This kind of explains the logisitcal challenge/nightmare!

I've been to both Amsterdam (with Cat and then on a stag do) and Ljubljana (backpacking honeymoon) and I love both cities.  Hoping to meet some Dutch friends and ME groups in Amsterdam.  Ljubljana/Slovenia will prove more challenging in trying to find patients to connect with.

Over Christmas I was lucky to get out for some great runs in Gran Canaria and Haywards Heath.  Two very different temperatures and terrains but both felt great!




That'll be my last Christmas away for a while, need to save up for flights/hotels to finish the challenge and as I haven't had much luck landing corporate sponsorship, something has to give.

Honey Power And Tim

So I googled '28 euro marathons' and was surprised to see that someone else was attempting my challenge too!!

Tim Teege from Hamburg is currently 3 races short of finishing all 28 marathons so I dropped him an email to have a chat.  Turns out, he's really nice bloke and we have a lot of notes to compare on race experiences and training.  Check his page out here

He sent me some natural energy gels with honey as the main ingredient which I'm due to try out on some of my upcoming longer runs.  Never really got on with gels as they usually make me feel sick, so I'm really hoping these work out.


Tim has Romania on his schedule the same year as me so maybe we can meet up!

Meat and Booze Free

Having spoken to Tim and also from reading a few books written by runners over the Christmas break, I decided to take the plunge and go meat and alcohol free for January!

The main reason being to both drop weight for the next race but also to see if it helped reduce my running times and make me feel a lot healthier.

  

Going alcohol free for January really wasn't that difficult.  I didn't feel like drinking and nobody was really up for going out anywhere.  I scheduled all of my long runs for Saturday morning so that I couldn't drink on Friday night which helped and on the few occasions that I left the house I coped OK on Diet Cokes.  It's February now and I'm having the odd sociable pint (no more than 3-4 per week) which is a marked difference to the norm (not that I'm a heavy drinker by any stretch).

Being a temporary (yes definitely temporary, maybe) vegetarian has been very interesting.  Our house is currently a building site as we get a small extension done which means the kitchen is out of action for 8-10 weeks.  So, not having to cook meat is certainly one less headache as we have a small portable oven and a hob in the living room to cook with.  We've had all kinds of weird and wonderful items to eat.  Until this year I hadn't ever eaten aubergine, chickpeas, cauliflower or butternut squash!  They're actually not that bad it turns out.

I've had some really successful long runs in training, some of which have been 5-7 mins faster than me in my prime.  Is it down to vegetables?  Not sure.  Only way of knowing is to carry it on for another month!

I'm supplementing my diet with multivitamins and protein muscle recovery shakes after each run.  I'm also trying to eat protein-rich vegetables and have changed my recovey exercises from painful foam-rolling to hip mobility stretches which has helped massively.  I'm no longer hobbling about between runs and it's working out well so far.

Marathon Globetrotters

I found this site and submitted my race times, it's full of folk who have run international marathons.  Some people have run in over 100 different countries!  I was really happy to get an email to say that I'd been made a provisional member (you get full membership after 10 different countries).  Seems like a friendly club.



Brass Monkeys

Now we're in the nasty English winter time, in order to get out of the door, it's important to remember how much I hated running in the Summer.


Here's a few reasons why running in the cold is so much better:

  • Less sweat.  Yes you do still sweat a bit but not to the point where you can't see where you're going!
  • The cold encourages you to hurry up to stay warm.
  • You feel pretty heroic when you're done!
  • The amazing views.  Whether it's snow, frost or winter sun, it's just great.
  • There's nobody else out running. Not many people brave those weekend mornings so you get the whole run to yourself!
  • There's less temptation to go out afterwards and eat/drink too much. Hot shower, wrap up warm and watch a film. Awesome.

Jen Brea - TED and 'Unrest'

January saw the unveiling of Jen Brea's super-inspiring and emotional TED Talk (click below).  Jen has been very receptive to my challenge so far and her organisation ME Action have run a couple of features of my races and reports on what it's like for ME sufferers around Europe.


Her long-awaited documentary/film 'Unrest' premiered at the Sundance Festival and won an award.  Can't wait to see it.

Norwegian Researchers Come To The UK

In late January, Dr Fluge and the team from Haukeland University in Norway visited the Invest In ME research team in Norwich.

The partnership and shared research has given real hope to ME patients.  Everyone waits in anticipation for the final wave of results to come through from the Norwegian Rituximab Trial.

There was a really good feature (right) from BBC Look East on the work that Invest In ME and their researchers are doing in collaboration with the Norwegian team as well as a feature on the new ME Centre Of Excellence to be based in Norwich.  Another fantastic achievement from a charity of volunteers run on donations alone.  Great for everyone to see where their donations are going and to hear Invest In ME finally mentioned on tv.

 


ME in Spain

As I usually do, I've interviewed patients in the country I'm next due to run in.  This time out I was really grateful to Maria, Gabriela and Teresa from Spain who shared their stories and experiences of living with ME in Spain.


As I type, the interviews have had over 3000 views which is great to see.  I will be translating them and sending them off to media and the health authorities over there, you never know...

To read the full interviews please click here

That's it from me for now.

Thanks again for all your support, I'm excited about year 3 of the challenge.  If I can stay injury free, raise some money and awareness then it'll be a great success.

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

Total Sponsorship Raised: £5707.90
Social Media Followers: 1383
Miles Covered: 142
Average Temp: 5C
Lessons Learned: Rest is good, but gotta keep at it!

Saturday, 5 November 2016

Aug/Sept/Oct Update

Been a while since I've done a round-up, but it's now 3 marathons since the last one and a lot has happened in the last 3 months.

Here's a quick recap on where we were back in July!


#7 Solidarnosci Marathon - Gdansk, Poland


Gdansk was a hard race as temperatures predictably rose from 16 to 26C across the race which I struggled with a little.  I got round OK and really enjoyed Gdansk and a boat trip to Westerplatte immediately after the race.  I had great support from our newly formed Polish ME Support Group and managed to talk to Mira, an ME sufferer from Warsaw.

Full race and trip report here


Pace Trial Data Release

In August there was a fantastic victory for the ME community.  If you're new to the story, in March 2014, Alem Matthees sought some of the data from the controversial PACE trial, using the process set out in the English Freedom of Information Act (FOIA). This information was held by Queen Mary University of London (QMUL). QMUL refused to disclose the data.

In October 2015, ordered that the information be disclosed. QMUL appealed against the IC’s decision; that appeal was heard by the First-Tier Tribunal on 20-22 April 2016 in central London.



The results of the PACE trial promoted psychosocial treatments (cognitive behavioural therapy and graded exercise therapy) which many patients find either ineffective or actively harmful. As a result, some patients have been using FOIA to try to obtain the trial data in order to understand how these results were achieved.

According to analysis of the released data, “recovery” rates for the graded exercise and cognitive behaviour therapy arms were in the mid-single-digits and were not statistically significant. In contrast, the PACE authors managed to report statistically significant “recovery” rates of 22 percent for their favored interventions.

The release of the data proves beyond any doubt that the treatments recommended to doctors in the UK and beyond to their patients is totally flawed and dangerous and needs to be changed.  The fight goes on to get the Lancet to retract it's support for the doomed trial but this is a huge step in the change of attitudes and treatment of people with ME.

For more detail please click here

If you haven't already, I'd urge you to please sign this petition to end harmful treatment of ME patients in the UK, click here


Summer running

Over the summer I was lucky enough to get in some really fantastic long runs.

Herm (Channel Islands)

                 

Sherborne (Dorset)




Cornwall (Bodmin to Padstow and back)



Belgium interviews

Just before the marathon in Brussels, I interviewed Nancy van Hoylandt from the Belgian ME Association about what the situation there for patients with ME.  Read here



Message From Down Under

I had a fantastic message on my website from an ME patient in Australia that I was keen to share.  It's one of a few amazing posts that I've had over the last 2 years, most from people that unfortunately I may never meet.

Hi Mike. I'm an ME/CFS sufferer from Melbourne, Australia, who's only just heard of your incredible efforts to raise funds and awareness for those experiencing this terrible condition. I'm an avid track and field fan, having followed the sport for more than two decades, which is also ironically about when I was diagnosed.

I'm really impressed by your putting your body on the line for the last couple of years (and in the years to come), in an effort to help those in my situation. I hope that much-needed research can lead to a cure, or effective treatment for those with ME/CFS so that I might one day complete a marathon too!

Best of luck on your next upcoming race, and many thanks for your efforts thus far, and in the future.


Millions Missing Protest

On September 27th I took part in the worldwide ME protest for health equality and funding for biomedical treatments.  Spread across 25 global cities, the events were the second round following a successful campaign earlier in May.



I went to the demo in Bristol and handed out flyers, talked to members of the public and some even donated some money to my challenge which was fantastic.  It was great to meet a lot of people who had supported me on Twitter and Facebook and put faces to names.  Regional tv and press came along to talk to some of us and the event was a huge success that I look forward to being a part of.

For more info on Millions Missing please click here

#8 Brussels Marathon - Belgium

Number 8  was a fairly last minute addition of Belgium to the schedule.  It was a real success for me as I managed my best race on by far the most challenging and hilliest course!



I met up with two ME patient organisations whilst I was over there (WUCB and Belgian ME Association), both helped me in securing press and donations to Invest In ME.

Full report on the race and trip here


Post Marathon -recovery and illness

Quick post on what seems to happen to me in the 4-5 days after a race:
  • Hamstring cramps - if I I've not sat down for 30 mins immediately post race or drunk enough water.
  • Calf strains/micro tears - a tightness that can be relieved with ice and foam roller but often when I'm abroad I don't have access to either for a day or so until I fly home
  • Sore quads and glutes - making it hard to climb or decend stairs, legs can feel heavy/immobile.
  • Hips - usually a stiffness and inability to rotate hip flexors very much
  • Minor Plantar Fascitis - a pain on the sole of the foot and edge, usually lasts a few days
  • Cold - nearly always seem to get a common cold, as though my body wants to fight back.  Most likely caused from the lack of sleep post-race (tired but wired) and the sub-conscious knowledge that I have a week off and it's a 'good' time to get ill.

Invest In ME Centre Of Excellence




Building work continues at pace over the Quadram Institute in Norwich where Invest In ME are planning to base their ME Centre Of Excellence.

Here's a recent statement on the fantastic news that they'd won a lottery grant for the project.

"We are therefore pleased to announce that Invest in ME Research has been awarded a Big Lottery Awards for All grant to help us publicise our proposal for a Centre of Excellence in Norwich, UK, which could form a hub of biomedical research into ME for Europe.  The charity will use the funding to create a business plan for the development of a dedicated Centre of Excellence for ME.
We will also produce a DVD containing the latest research, information and support with regard to ME – still to be decided but maybe connected with the IIMEC12 conference in 2017.

We also plan to organise an event explaining our proposal and plans for the Centre of Excellence for ME to potential beneficiaries. This will show the potential for such a Centre and how it can achieve a dramatic change in progress in resolving this disease.
Our proposal holds out great hope to find the cause(s) and treatment(s) for this disease by creating a hub of translational biomedical research into ME which would be sustainable.  A strategy of biomedical research is being developed and would be expanded by this Centre and provide a focal point for developing treatments based on high-quality research.
We invite support from anyone who wishes to make progress in understanding and treating this disease. More details of funding campaigns will be coming out in the future.  We are very grateful to Awards For All for this support for our CofEforME proposal.
This will take a major effort to achieve but we feel it can be done and the rewards for people with ME would be huge"
Here's a great FAQ on how the centre of excellence will operate.


#9 Toulouse Marathon, France

3 weeks after running Brussels Marathon, I lined up for my second race of October in Toulouse.  In truth I'd been struggling to recover a little from the rigours of the former.  Martin, my sports massage guy, told me my legs were 'wrecked'.  I'd done a long run a week before Toulouse and although it had gone well I could definitely feel pain when walking along the edge and arch of my right foot as well what felt like a muscle tear by my left knee.



In any case I knew I had the mental strength to finish the race, though it certainly wasn't going to be easy.  For my race report click here


Karina Hansen

On Monday 17 October 2016, after three and a half years of incarceration, Karina (who has severe ME ) was finally returned home to her family. The arrangement was on a trial basis but in the hope and expectation that she would be finally and permanently back where she belongs.

In 2008, Karina (who lives in Denmark) was diagnosed with severe ME.  As we know, ME patients in many countries are still routinely referred to psychiatrists who use the inappropriate, and sometimes dangerous, psychosocial treatment model.  Karina's family continued to care for her at home, in accordance with her express wishes. However, in February 2013, then aged 24, she was forcibly removed from her home by a large team of police, doctors and social workers. She was taken to Hammel Neurocenter, against both her own will and that of her family. Hammel is part of “The Research Clinic for Functional Disorders” at Aarhus University Hospital.


Shortly after her initial detention, she was classed as a “voluntary” patient, despite having been taken there against her will; she was found by a court subsequently to lack capacity to make her own decisions. As a result of that finding, the court appointed a legal guardian to take responsibility for her welfare and make decisions on her behalf. Her condition deteriorated rapidly after her admission to the Clinic.

Three years on, in February 2016, Karina remained a de facto prisoner of the state. She had been moved to a nearby rehabilitation center but allowed very little contact with her family. Her father was permitted to visit her in December 2015. Whilst she was physically clean and cared-for, she was apparently immobilized, in a wheelchair and unable to speak except for incomprehensible mumbling and grimaces. At that time, she did not appear to recognize her own father.

I completely agree with Valerie Eliot Smith's comments on her story, "Karina’s story is horrifying. It is a story which should be of the utmost international concern, as a salutary reminder not only of a shocking breach of one young woman’s rights but also of the continuing scandal of the appalling treatment and stigmatization of ME patients all over the world"

For more background please click here

Close Season Plan

Now that I've finished trainng for the year, I'll be taking a couple of weeks off running altogether.  After that I've decided to run twice a week to try and keep some of my fitness and make it less of a shock when training begins again on Christmas Day in Gran Canaria.

Back with a pre-Christmas update in mid December where I hope to have booked another race for 2017 (Currently have Spain in March, Luxembourg in May and Lithuania in Sept).  I'll also be working hard to secure some help with the cost of flights, hotels and kit from corporate sponsors, wish me luck!

Thanks for all your support the last 3 months and (18!).  9 down, 19 to go!

www.justgiving.com/mikeseumarathons

Total Sponsorship Raised: £5446.20
Social Media Followers: 1302
Miles Covered: 261
Average Temp: 20C
Lessons Learned: Plenty!  Probably not to fear hills and recover properly!


Sunday, 31 July 2016

June/July 2016 Update



It's Summer!  Finally, sort of, over here in the crazy UK.  So much to bring you up to date with if you haven't been following my semi-regular Facebook page.


The bend before the finish line!

First up a quick word on Marathon #6: Stockholm on June 4th!  Well it was a really amazing trip.  I got round in 4hrs and 5 mins which I was pretty happy with given the heat on the day (25C) and the hills.  The course was great, taking in some fantastic views and with some decent support in the built up areas.


Finished! Outside the Olympic Stadium

It was my first trip to Sweden and came with many highlights including getting over to the beautiful Fjaderholmarna island and Skansen Park the day before as well as meeting up with ME patients Susanne and Catharina immediately after the race.

Full race report here and pics here 

Invest In ME Conference


I couldn't make the conference due to being in Sweden but I heard it was a fantastic success.  If you'd like to find out what was discussed then there's some very useful info/links below.

Conference Journal -I'm on page 33-36!

Invest In ME report on the Conference 

They also managed to raise some money for our cause with a collection tin at the conference which I've added to the justgiving site.

I'll try and get to the next one guys!  Won't be racing that weekend next year.

Change in schedule!

First up, I've booked my 2nd race for 2017 (to follow Barcelona Marathon on March 12th) and it's going to be the exciting Luxembourg Night Marathon.  Exciting for many reasons, not least that it starts at 7pm which will no doubt be the latest kick off of all 28 that I do.  It presents all kinds of dietary conundrums but hopefully I'll be able to deal with that, I get a lie-in I guess!  Will be strange finishing a race at circa 11pm, eating dinner and going to bed!


ING Luxembourg Night Marathon, race number 11 of 28.

I've never been to Luxembourg and really don't know what to expect from it.  Maybe some cobbled streets, smart alfresco restaurants and nice squares mixed in with some imposing business-district buildings?  I'm not sure given the small population that I'm likely to make contact with any ME patients/groups but I'll certainly try to look and do what I can there.

Impulse buy


So, the other change is a very last minute entry into Brussels Marathon on October 2nd this year.  I toyed with this a lot.  Major considerations were cost and whether I could physically do 2 marathons in 3 weeks.  But as I'm feeling good and could get cheapish flights and accommodation I thought I'd give it a go.  I've been to Brussels before but only for a few hours before heading off to Bruges (where I proposed to my wife, Cat).  We went to the main square and it looked amazing, I'm looking forward to going back and exploring it properly.  I've already made contact with Nancy Van Hoylandt from the Belgium ME/CFS Association (already members of the European ME Alliance) so hopefully we can meet up and get some press/raise awareness on this one.

ME in Poland

In June I managed to interview Mira from Warsaw about what it's like for ME patients in Poland.  The article has so far received over 5,000 views and has been shared over 100 times across a number of sites.

The piece focuses on the continuing struggle around the perception of ME in the country.  Not only that but where there is an interest in the illness, upon further research it's clear that exercise therapy is the most favoured form of treatment prescribed.  As we know this only makes patients worse and it's no surprise that they're not keen to come forward for help at this particular clinic.  I'll continue to try to find doctors and researchers that advocate biomedical research, hopefully we can put them in touch with the European ME Alliance.  There's approx 150,000 people suffering with ME in Poland, the challenge is as it is with many countries in Europe but hopefully things will improve with recent breakthroughs and developments ocurring elsewhere.


Mira has been really helpful (despite her severe ME) with giving me media contacts and I hope to have something to report on this soon.  I was really happy that ME Action were able to feature it on their site, which has become a hugely successful platform for information and news.

Polska ME / CFS Grupa Wsparcia

I decided that I needed a focal point for bringing together Polish patients and that setting up a facebook group would be a decent start.  There didn't appear to be any in existence and I thought it would be a good way of getting people to talk, help each other and share knowledge.


With the help of Juli Persson (a Polish speaking ME patient), it grew to 55 members within the first 48 hours and I'm hopeful that now I've taken a backseat to let it grow organically, it can make a difference to someone, whether they themselves are Polish, or maybe their carers, family or friends.

#MEPedia


Big thanks to Karen Denmark for putting me onto MEPedia -a crowd-sourced encyclopedia of ME/CFS.  Hopefully it'll get some decent traffic and inspire others to take up challenges to raise funds and awareness.  MEPedia is an initiative by ME Action -I'll be at their #MillionsMissing protest in Bristol on Sept 27th -more on that next month!

Brexit 


I couldn't write without mentioning the infamous referendum.  I'm not going to get into my thoughts on the result, I don't want to upset people or lose supporters.  What I will say is that it took me a fair few days to try to figure out the impact on this challenge.

Prominent thoughts:

  • If the UK are out of the EU, will anyone care that I'm still doing the challenge?
  • Should I scrap the EU plan and run in every country in Europe? (maybe another 20 countries)
  • Will the rest of the EU countries be interested in supporting me?
  • Will more countries leave and what will that mean for the challenge?
  • Will the EU dissolve/combust?!
Conclusions:
  • People still need help regardless of where they live
  • The EU could in fact grow, would I add more countries in that case?  If not then it doesn't make any difference.
  • Everyone I've met in the EU has been fantastic so I'd hope that would continue
  • I've done the UK already.
  • I really can't afford to get to every European country and some don't have recognised marathon races.
There you go.  I'm carrying on.  Maybe i'll try and do it quicker so the EU isn't a distant memory when I've finished.


Solidarnosci Marathon, Gdansk (August 15th)


Just a few lines on the significance of this unique race!

The Solidarity Marathon commemorates the workers who were killed by the Polish communist army and police during the strikes and riots of December 1970 in the area.  The race is always held on the 15th of August (a public holiday and the feast of the Assumption of Mary, an important feast day in Poland).

The uprising was in protest to a sharp rise in the cost of food and everyday items by the ruling communist government and saw those working in the dockyards in Gdansk, walk out on strike in protest.  After other workers did the same across the city and tri-city region, they were met with fierce aggression by the militia who shot dead a number of the protesters.  Demonstrations and strikes broke out in Gdansk, Gdynia and Szczecin in the north, which were brutally suppressed by 27,000 communists troops, and a hail of bullets were fired at workers in Gdynia on 17 December, with 42 killed during the month-long protests and over 1,000 wounded.

In detail -more info 

The price increases were abandoned shortly after, and the uprising was seen as the catalyst for change and the first time that communist rule was seriously challenged in Poland.  In August 1980, after more strikes, the Solidarność ("Solidarity"), the first independent trade union in a Warsaw Pact country, was born at the Gdańsk shipyard.  Martial law was declared in 1981 and the struggle continued until communism fell and the country transitioned to a liberal democratic political system after 1989.

There is a ceremony prior to the start of the race at The Victims of December 1970 Monument in Gdynia which is said to be very poignant.  It's not too hard to see the parallels with the ongoing fight that ME patients worldwide have with their governments to get the respect and treatment they deserve.  We must keep pushing them and force a change.


There you go, you're up to date now.  I've got 2 weeks until the next race, got my Zloty's sorted and I'm taking a keen interest in Gdansk weather and webcams.  I know this one won't be my best, it's likely to hit 30C whilst I'm out there, there's only 700 of us running with traffic and with very little crowds.  I think it'll be the toughest one I do but I feel like I can get around OK.  I've got a new phone and will be posting the odd video update along with my usual tourist pics of the town.

It would be amazing to hit £4K of donations to biomedical research and Invest In ME by the morning of the race!

If you can spare just £1 I would really appreciate it!

Text IIME82 and £1 to 70070

Catch up soon!

Total Sponsorship Raised: £3775.31
Social Media Followers: 1234
Miles Covered: 176
Average Temp: 20C
Lessons Learned: I can do hills a bit!