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 […]
As you will know, Hansard is an edited verbatim record of all matters discussed in Parliament and records all votes and written ministerial statements. You may be interested in when ME has been mentioned, and so a link to that record is below.
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.
There has since been an All Party Parliamentary Group (APPG) formed to discuss the way ahead in helping MP's Constituents with ME. Contact your MP to ensure they're representing you !
To watch the video of Carol Monaghan MP addressing Parliament on M.E., click on the link below:
There are so many questions banded about as to the story of Myalgic Encephalomyelitis (ME), but this video gives a better and fuller insight than most. Once you've watched it, please copy the link and spread the word to raise awareness. Thank you.
To watch this video, click on the link below:
The York Access Group is a Facebook group which is aimed at improving Accessibility in York for those trying to get around with a Disability. Feedback on bad, and good Accessibility of shops, streets, cafes, restaurants and any other facilities are welcomed.
It's also the place to discuss mobility aids from walking sticks to scooters. If this sounds like a group for you, you're most welcome !
As we all know, especially those who need Wheelchairs or Mobility Scooters to get around, vehicles parking on pavements and blocking our way can have a major effect on our lives. It can mean that we are likely to put ourselves in danger by going onto busy roads because of inconsiderate parking. 
If you live in York, and you see a vehicle parked across a dropped kerb, call the council's hotline on 0800 138 1119 and the Civil Enforcement Officers will respond and are able to issue tickets. We know this won't help you right then and there, but the hope is that the more people report it, the more people get tickets, then slowly behaviour will start to change.
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:
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."
The York ME Community
@YorkMEAwareness
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).
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 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 likely to be around 800-1,000 people of all ages in the York area with ME 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.
As has been stated by Dr Sarah Jarvis and others, it’s possible that the Coronavirus could trigger M.E. in those people who get through the worst of the virus, and are seen to be in the recovery phase.
Please do not think that once you’re in that phase that you should just get back to your normal routine. As someone who has just passed his 14th anniversary with ME, the most important thing you can do is rest.
Resting should be from both physical and mental / cognitive activities.
Do not push beyond what your body is telling you. Your head might tell you something different, and you’ll be keen to make up for lost time, but please take advantage of this lockdown to recover properly. If you push beyond your limited energies now, and M.E. follows, it could change your life for years to come.
Be sensible and rest up. Take care.
Those within the ME Community have always known how damaging being prescribed Graded Exercise Therapy (GET) can be to their future health. We have a broken energy production system and therefore normal rules do not apply. The PACE Trial tried to show that it helps, but has been debunked by scientists and researchers worldwide. The PACE Trial in fact is now held up as an example of how NOT to conduct such trials.
To understand better the truth of GET and The PACE Trial, click on the link below to watch two short videos.
Dr Byron Hyde has dedicated his medical career to looking into M.E.
In this interview Dr. Byron Hyde, founder of the Nightingale Research Foundation in Ottawa, Canada, emphasizes the brain and enteroviruses. He also emphasizes his belief that Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are separate issues.
To watch this interview on YouTube, click on the link below:
We are the ME/CFS Biomedical Partnership, a collaboration between researchers and people with ME/CFS, carers and the public.
The DecodeME DNA study aims to help us understand the disease and ultimately find treatments.
To read more, or get involved, click on the link below:
This is open to any organisation looking to have a bit of fun whilst supporting your local community. We're underway now for the current season but will be recruiting teams for our 6th season around July 2021. Although the aim is spreading ME Awareness, as a bonus we have also raised over £920.00 for Invest in ME Research, so why not join us ?
To join in for next season, click on the Fantasy Football League tab at the top of the site for all the information you'll need.
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 |
To read the ME Research Summary 2019 by ME Action covering the last ten years, 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.
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. I will be aiming to keep up the pressure to ensure future support.
The motion put before Council with regard to support in raising ME Awareness in York was passed unanimously !
The City of York Council has followed through on their promise by lighting up the city walls and Clifford's Tower in blue over the ME Awareness Weeks since that meeting.
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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. There is parking available just around the corner at Nunnery Lane Car Park. Blue Badge holders can park for free.
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The third Wednesday of each month - at 2 pm - The York ME Community Coffee Club at The Novotel, York. Parking is free at the hotel.
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Weekly - Every Wed, 8 pm - 9 pm on Twitter, ME Awareness Hour using the #MEAwarenesshour hashtag.
