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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!

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!

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