Good luck to Mike Harley who is running 28 Marathons across Europe to raise Awareness and funds for Invest In ME Research. On Sunday the 17th of March he will be running the Cyprus Marathon. As always, a huge thanks from everyone in The York ME Community Mike ! See the tab […]
By Mike Harley. Running a marathon in each EU member country (28 currently) for Invest In ME (www.investinme.org) for biomedical research to treat and cure ME. Next up: #20 Paphos (Cyprus), 17/03/19 To read the rest of this story, click on the link below: Link to Mike Harley’s story
By Mike Harley. Just 5 weeks after Tallinn, I travelled to Sofia in Bulgaria to run their city marathon for number 19 of 28. With Cat 38 weeks pregnant I had expected to be going solo but one of my good mates, Mike Ward, volunteered to come with me. I tried hard to find a […]
By Mike Harley. I spoke to Rebecca Hansen from the Danish ME Association ME Foreningen and severe ME patient Kamilla Thomsen. Here’s what they told me about living with ME in Denmark. For Danish translations click here Rebecca Hansen Can you give us an overview of what life is like for ME patients in […]
AUSTRIA I’ve interviewed 3 people with ME in Austria who have given me their account of life there with the illness. How did you get ill and how were you diagnosed? Sebastian: Probably following an EBV infection at elementary school age. Sonja: I had neuroborreliosis from 2011-2014, after which I was fine for 1 year. When […]
By Mike Harley. I made contact with the Malta ME, CFS and Fibromyalgia Alliance before flying out for number 15 of 28, here’s what they told me about life in Malta with ME. I had lots of great support from the group and they managed to get the challenge featured in Lovin Malta alongside the coverage I managed […]
My name is Mike Harley, I’m 35 and live in Bristol, UK and I’m running Malta Marathon as part of my challenge to run a marathon in every country in the EU (28 in total) to help raise money and awareness for biomedical research to find a cure for Myalgic Encephalomyelitis (M.E.) One of […]
MALTA I’ve been speaking to the Malta ME, CFS & Fibromyalgia Alliance about ME there and here’s a summary of my findings from talking with them and my own research. Number of ME patients in Malta There is no study or any estimates to show or at least a demarcation if there ever was […]
By Mike Harley. SLOVENIA I talked to a number of patients within the only Slovenia ME/FM facebook group (500 members) about their experiences living with ME & FM in Slovenia, here’s what they told me….. How do doctors in Slovenia perceive ME? Some are professional but others are very unprofessional. The result seems […]
From Mike Harley’s EU Marathons Website. Ahead of my trip to Amsterdam I’d made contact with a number of Dutch patient groups and associations who had all been very interested in supporting my challenge. I interviewed M.E patients Anil and Frank along with campaigner and carer Rob, click here to read what they had […]
By Mike Harley. Prior to flying out to Vilnius for number 12 of 28 I was contacted by a Lithuanian sports journalist working for the marathon who was keen to interview me. I thought our interview would be used on the marathon website but it actually made it into Lithuania’s main newspaper and site, […]
Mike Harley is running an amazing 26 Marathons across Europe to raise awareness of ME, and funds for Invest in ME Research. Next one up, his 12th, is on Sunday 10th of September 2017 in Vilnius in Lithuania. A part of what Mike does is to get in touch with locals in the area […]
Ahead of the Luxembourg Night Marathon, my good friend Juli managed to track down one of the estimated 2000 ME sufferers there. I interviewed Katja who told me about her struggle for diagnosis and what it is like for patients in the Grand Duchy, click here to read. I had some great coverage ahead of […]
This is Mike with his ME Awareness Flag on completion of the Luxembourg Marathon on 27 May 2017. That’s 11 down and 17 to go in his aim of running a marathon in every EU country for ME Awareness. Read his story by hitting the tab at the top of this site. […]
LUXEMBOURG By Mike Harley. My next marathon (no 11 of 28) is in Luxembourg on May 27th. By similar ratios to the rest of Europe, 2,000 of the 500,000 people living there have ME. I’ve interviewed Katja from Luxembourg who has given her account of what it’s like to live there with […]
Report by Mike Harley. Training for number ten went really well. I’d decided to try a vegetarian diet for the 3 months prior to the race in Barcelona and also went alcohol-free for January in order to get healthy and drop weight. It seemed to work as I was smashing through PB’s and […]
The York ME Community would like to wish Mike Harley good luck as he runs the Barcelona Marathon this weekend in aid of Invest in ME Research, and to help raise ME Awareness. To read more on Mike’s amazing achievements so far, hit the link at the top of this site.
Mike Harley is running an amazing 28 marathons across Europe to help raise awareness and funds for Invest in ME Research. His next run is the Barcelona Marathon on Sunday the 12th March. To read more about Mike’s Marathon effort and lend your support, click on the tab at the top of this site.
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 […]
Allez les bleus! 2 days til I head out to Toulouse for marathon no. 5 of the year and 9 overall. £3000 raised so far this year for Invest In ME. Thanks to Gillian Wyke and James Herrington for your sponsorship today. I’ve run an average of just over 3 miles per day since […]
Mike Harley is attempting to raise funds and awareness for the charity Invest In ME and biomedical research by running a marathon in every EU country (currently 28 in total). His 8th marathon will be in Brussels on 2 October 2016. He is in his final preparations for that run and I’m sure he’d […]
Wow that was tough. No shade throughout and a real challenge but got back in 4.25, a Summer PB at least. The finish was superb, amongst the best I’ve experienced, I ran over the line with my Invest In ME flag and got snapped a lot (hope to show soon). Cheers everyone […]
Well since my last update at the end of February I have…. Finished marathon 5 (Greece) of 28 -completed in 4.03 hrs Raised £700 more for Invest In ME Research projects (now stands at £3157) Had my first published blog on Running Bug website Been asked to write a feature on the challenge […]
My 5th marathon took me to Thessaloniki in Northern Greece for the Alexander The Great Marathon in early April. Although not a really well-known race (approx 1700 runners) it is in fact a Bronze IAAF course and one of historical significance as it starts at the birthplace of Alexander The Great in Pella and […]
Mike Harley is currently part way through his mammoth mission to run a marathon in each EU country, 28 in all, in aid of Invest of ME. Please have a look at his site that covers his running schedule and a whole lot more to boot with regards ME. To connect to Mike’s […]
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The first Monday of each month at 11 am - The York ME Community Coffee Club at Bar Convent, 17 Blossom Street, York.
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The third Wednesday of each month - at 2 pm - The York ME Community Coffee Club at The Novotel, York.
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Weekly - Every Wed, 8 pm - 9 pm on Twitter, ME Awareness Hour using the #MEAwarenesshour hashtag.
Access Your Life is a site run by Felix and Lauren, with a little input from Fliss, the dog!
The site is full of great information that I feel will benefit many within The York ME Community and beyond.
To go to Access Your Life, click on the link below:
Would you like to help your local community ?
By current research, there are around 800 people in the York area suffering from Myalgic Encephalomyelitis (ME). This might include the work colleagues you haven't seen in some time, or your friends and family, maybe one of the lads who hasn't turned up for five-a-side for a while.
There's information at the top of this site to explain how it affects people and ruins lives. These are your neighbours; would you like to help ? To read the rest of this request, click on the link below:
The social element of this site is via a Facebook Group called The York ME Community.
This is available to people in the York area looking for help, advice and support, whether those diagnosed, family or friends. We are a close knit group who discuss more than just ME, as we like to think that we are not defined by this illness. We discuss every day things, have a laugh, and try to meet via our Coffee Club if the beast that is ME allows us ! If you apply to join, please check your Facebook messages, as there are a couple of automated questions to be answered before being welcomed to the group.
Please don't apply to join if you are promoting your preferred remedy. I'm happy to mention your company within the group, but it's for individuals to choose what they wish to try in their battle to seek an improvement in their health.
Some companies and organisations offer discounts for disabled people and their carers – click on the link below to find out what you could save.
Carol Monaghan SNP spoke in Westminster Hall about the need for support and funds for ME Research. Many other MP's spoke passionately on the subject as it affects their constituents UK wide. Click on the link below to watch the full debate.
Anil's interview gives a great insight to the man and his ME mission !
Link to Anil van der Zee's Interview
Having read the above interview, I'd recommend a visit to David's Blog below:
After a pretty tough time, the guys riding as part of The Nomadic Knights group, made it to Everest Base Camp. I hope we can use this story to gain interest from media sources to help raise awareness for us all. It's the least the guys deserve for all their efforts.
19 May 2017.
“Very pleased to report that we reached Mt Qomolangma (Everest) Base Camp with the ME Awareness Flag at 1528hrs on Thursday 18th May. Three and a half hours after we had planned but time in Tibet can sometimes be very fluid. The base camp is located at 5200m, walking to the final destination was challenging in itself due to low oxygen levels.
Conditions at base camp were extremely windy (good for flag flying) with intermittent clouds with no particular destination in mind and the sun was not ideal for photos."
Debbie North, our TOG wheelchair walk designer uses an off-road mobility scooter, also called an all terrain hopper to access the countryside and wants to inspire other wheelchair users to do the same through her wheel friendly walks.
Wheelchair friendly walks are a selection of walks that the TOG team have carefully selected for families using pushchairs, wheelchairs or bicycles.
The Jen Brea ME film 'Unrest', about her story and struggle with Myalgic Encephalomyelitis (ME) was shown to a sellout audience at City Screen York on 1st November, prompting a second showing on 16 November. This film has won awards at The Sundance Film Festival and is a must see for all wishing and needing to know more about an illness affecting over 800 people in the York area alone.
Although still showing around the UK and worldwide, it's now also available on Amazon and iTunes and through the Unrest UK Store on DVD and Blu-Ray by clicking on this link: Unrest site to save having to undertake a journey to the cinema.,
Please spread the word through your GP, MP, Company HR Teams and any other people of influence you may know. Thank you.
One of the major questions raised is the blending of ME with CFS. This chart on the Hummingbirds site illustrates the many differences between Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME).
For confidential and independent advice for everyone on welfare benefits, debt, housing, employment, consumer rights and much more.
Welcome to Broken Puppet Theatre Company.
We are a small team of creative professionals who live with chronic illness and invisible disabilities. We work with theatre, film and puppetry to support children, families, schools and communities who are learning to share their world with chronic illness and invisible disabilities too. Our aim is to provide creative expression and escapism wherever they are needed.
Helpfulpeeps is a platform that allows people in any given area to ask for and offer help to one another. Although this is a nationwide facility, by adding your street name, the system automatically drops a pin on that location and you only see posts from a 20 mile radius. You have the option to narrow or widen this radius. I hope this is a useful facility for members of our Community.
If you're given the time and space to talk things through, you can find a way through your problems.
Samaritans help you to explore your options so you can make decisions that are right for you.
Upon request, North Yorkshire Fire & Rescue Service can carry out a home fire safety visit to your home, completely free of charge. This visit involves fire service staff coming to your home to give you advice on fire safety in the home, actions you can take to reduce the risk of fire, and discuss escape routes should fire occur.
If you don't aim to take up this offer, please at least check the batteries on your smoke alarms on a regular basis. If you want to read more, click on the link below:
FEATURED ARTICLE
By
Sally Duffin
Hello to all the members of York ME Community. I’m Sally, a Naturopathic Nutritional Therapist at ‘Nutrition in York’ and Bill has asked me to share some nutritional therapy approaches for managing ME.
Many nutritional therapists – myself included – are trained in the Functional Medicine approach to healthcare which means we are less concerned with the name of a condition (ME, CFS etc.) and more interested in the underlying cause and contributing factors of the condition. (more…)
Last season was a great success with loads of local company teams involved, and this season promises to be even better. With the aim of spreading ME Awareness, as a bonus, we have also raised around £800.00 for Invest in ME Research, so why not join us ?
This is a call out to all York (and beyond) Businesses, Clubs and Venues to join us for next season and support your local ME Community.
To join in for next season, click on the tab at the top of the site for more information, or just to register your interest.
The aim of this group is to bring together everyone in York with a need for a little help in getting out and about in our beautiful city.
This includes those who use, or are thinking about using any type of mobility aid, from a simple walking stick, to a wheelchair or mobility scooter. This is where we can share advice, ideas and support on all things mobility, including any ideas that might help us around the house, or out and about.
It will also be where we can raise concerns of accessibility issues in York, and maybe create a strong enough voice to effect the changes needed to help us be a full part in what’s going on and live a fuller life.
We can share names of accessible shops, cafes and venues, as well as those that need to improve if they want to get our custom.
If you know of someone who might like to be a part of this group, please let them know, and let’s all join in with ideas, suggestions and support to those who might need it.
Let’s make York a better place for all of us.
To read the ME Research Summary 2019 by ME Action covering the last ten years, click on the link below:
There is a great need for the training of those with a Duty of Care to those with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS). For those in Healthcare, Education or Business with this Duty of Care, this E-Learning Course is the one for you.
To learn more, click on the link below:
AccessAble in York provides information on Shopmobility, Talking Signs, Dial & Ride, York Wheels and accessible Hotels, Restaurants, Public Toilets and a whole lot more in our city. To find out more before setting off for York, click on the link below:
The York Inset Scooter Club is based in York (UK) and has a membership of around 250.
They are a thriving, active club and look to support local charities when they can. They have an annual Mods and Rockers charity ride out, and for 2019 supported The York ME Community.
They headed off from The York Eye (Clifford’s Tower) on Sun 28 Apr on a run out to the coast, set off by the Mayor of York and the York Normandy Veterans.
All money raised will be used to raise the profile of ME in York through posters being produced and put up in local business premises, clubs, schools, GP Surgeries and venues.
Euan’s Guide is the disabled access review website used by disabled people to review, share and discover accessible places to visit. The charity was founded in 2013 by Euan MacDonald, who is a powerchair user, and his sister Kiki. As Euan’s access requirements changed, both went in search of recommendations for accessible places to go, but a platform for this kind of information didn’t exist. Built as a friendly and honest alternative to hours of web searching and phone calls before visiting somewhere new, Euan’s Guide now has thousands of disabled access reviews and listings for places all over the UK and beyond.
To go to Euan's Website, click on the link below:
Our Coffee Club meets twice a month for a cuppa and a natter.
Dates and times will always be shown in our diary at the top left of this site.
The Coffee Club is open to anyone either with ME, or friends and family looking for support from people who understand.
Due to the nature of the illness, there will be times when numbers are low, but if you'd like to attend, either just turn up on the day, or email me at bill@York-ME-Community.org. If you're a member of our Facebook Group, you can of course say you'll be going via the notice in the Events area.
Help us raise money for The York ME Community to pass onto Invest in ME Research every time you shop online, and it doesn't cost you a penny !
By using the link below, when you shop online with a huge number of shops, they will pass a percentage of your purchase cost to our fund. THIS MONEY IS DONATED BY THE RETAILERS, NOT YOU !
Written Question to the Department of Health and Social Care on 22 May 2018 by Carol Monaghan SNP, answered by Caroline Dinenage Minister of State (Department of Health and Social Care)
| Financial Year | £ |
| 2014-15 | 280,442 |
| 2015-16 | 295,626 |
| 2016-17 | 130,958 |
A TRUE STORY BY JESSICA TAYLOR-BEARMAN
Book Description: From a darkened world, bound by four walls, a young woman called Jessica tells the tale of her battle against the M.E Monster. The severest form of a neuro immune disease called Myalgic Encephalomyelitis went to war with her at just 15 years old. From beneath her dark glasses, Jessica glimpses a world far different from the one she remembers as a teenage school girl. This true story follows her path as she ends up living in hospital for years with tubes keeping her alive.
This harrowing story follows the highs and lows of the disease and being hospitalised, captured through her voice activated technology diary called `Bug' that enables her to fulfil her dream of one day becoming an author.
It provides a raw, real-time honesty to the story that would be impossible to capture in hindsight.
To order the book through Jessica's site, click on the link below:
This book is also now available at York Library
An album of original songs and poetry composed and performed by people with M.E. from all over the world, was released to mark and support ME Awareness Day, 12 May 2018.
It was hoped that by releasing this album, it will help those with ME to know that they are not alone, and for others to understand the nature of this illness and give what support they can.
Please consider downloading the album, or even a couple of tracks to help raise awareness of ME, and much needed funds for research into this illness that affects so many, but is understood by so few who may be in positions to help. Proceeds to ME Research and Education. All further information and questions, please direct via the website below: The album can be downloaded now from:
PLEASE SPREAD THE WORD !
I had a very productive meeting with Cllr Aspden and Cllr Runciman of City of York Council where they have stated they will back efforts to raise awareness of ME, understanding that much more is needed to increase understanding of this debilitating disorder, in York and across the UK.
The motion put before Council with regard to support in raising ME Awareness in York was passed unanimously !
The City of York Council followed through on their promise by lighting up the city walls and Clifford's Tower in blue over ME Awareness Week.
Are you a member of a York based Sports or Fitness Club ? Looking for a local cause to run or do an activity for ? The York ME Community are looking to be 'adopted' by anyone willing to maybe run for us and help raise our profile. There are around 800 people of all ages in the York area who would be so very grateful for your help.
We had a brilliant day at York Explore Library raising ME Awareness. Lots of interest in what we're doing from local health groups, charities, the council and most heart warmingly, from those dealing with ME themselves who now know we're here for them.
If you'd like to hear more about ME, get in touch.
Time For Unrest: Why Patients With ME Are Demanding Justice.
If you want the full story on ME and will read just one article about it this year, please make it this one,
Are you on Twitter? Learn more about ME every Wednesday, 8 pm - 9 pm (UK) using #MEAwarenesshour
Mike Harley is a very special guy who's running a marathon in each EU country to raise awareness and funds for Invest in ME Research. Please visit his site to learn more.
To go to the Government's Disability Benefits Advice Guide, click on the link below: