Fatigue And ME I have a worry on my mind That spins my head around It causes grief, it’s beyond belief And an answer must be found It’s about a word that’s used a lot A word filled with intrigue Not beat, not weary, not tired or wired But that bleedin’ word fatigue ! It’s […]
My M.E. MOT Woke up today It’s not gone away This beast, it’s here for good Thought maybe a dream But a nightmare it seems I’d sleep through it all if I could. As another day dawns There’s something more going on The pain’s a bit harder to stand It’s tougher […]
The deed has been done. Recording was done earlier today. I didn’t manage to cover everything, but hopefully enough to raise a bit of ME Awareness. Confirmed it will be on after 9pm on Friday 21 Feb; probably too late for some unfortunately. BBC Radio York 103.7 FM.#MEAwareness
NOISE AND ME My ME sensory radar Has really taken hold It’s caused my life to change, In a way that’s strange And not just because I’m old ! Noise and sounds now cripple me In ways some won’t believe The click of a door Can get right to my core In a […]
M.E. – JUST CUT AND PASTE….. Hair’s a mess, can’t get dressed Can I shower, that’s the test Done ok, the shoes are on Now where the hell’s my energy gone? Another day has been a waste Another day just cut and paste. Can’t get the hang of doing nowt Want to do, wanna […]
Metaphors And ME Explaining what ME is like Is really pretty tough We want to keep it simple But it’s more than feeling rough We could start the list of symptoms But you’d find them a bit of a bore So those of us in the ME club Like a nifty metaphor The […]
ME.rry Christmas ! On the first day of illness My ME gave to me A shrug from my local GP On the second day of illness My ME gave to me A shed load of pain A bog for a brain And a shrug from my local GP On the third day of illness […]
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HELLO, IS IT ME YOU’RE LOOKING FOR ? I’m sure you know the feeling I’m sure you know the score Hit with ME, you soon get to see How things are not as before I hoped my friends would stay with me I seriously thought they would I thought that they’d care And […]
HELLO, IS IT ME YOU’RE LOOKING FOR ? I’m sure you know the feeling I’m sure you know the score Hit with ME, you soon get to see How things are not as before I hoped my friends would stay with me I seriously thought they would I thought that they’d care And […]
ME, I’ve Never Looked Better Just the other day A friend just happened to say My, you’re looking well He’d forgotten about the ME hell We’d not seen each other for a while So when he said it, I gave a smile He meant it as a friendly greeting The thing you say, when […]
A REFLECTION OF ME I thought I was being followed Maybe being stalked I saw him running in the park As I just slowly walked I saw him through the window I saw him in the crowd Full of cheer, having a beer, In that pub that’s now too loud I saw him at […]
Gone from being life and soul Health gone down a huge black hole Rarely getting out too far Too much pain is the bar A blue badge now has rescued me When strength allows, it sets me free It gets me to a needed door Which was out of my aching reach before Many are […]
There was a young lady from Goole Whose doc made her feel like a fool So she told her GP If you can’t see it’s M.E. It’s time you went back off to school By Bill Clayton ©2016
MY ME PUZZLE From our early days as we grow We learn and add to what we know Each piece of knowledge builds a picture To help us make our living richer We find the people who fit right in Our family, friends, our kith, our kin We find beliefs, our way, our […]
The Guilt of ME When the beast descends we know the score Strength and hope go through the floor We’ve all been on this road before Another day of guilt Want to take my part in life Want to spend some time with wife Want to cause no further strife Another day of […]
M.E. – JUST CUT AND PASTE….. Hair’s a mess, can’t get dressed Can I shower, that’s the test Done ok, the shoes are on Now where the hell’s my energy gone? Another day has been a waste Another day just cut and paste. Can’t get the hang of doing nowt Want to […]
ME isn’t real you know ME is all just fake I chose to give up work you know To rely upon the state ME isn’t real you know It’s all just in my mind I just fancied giving up On everything in my life ME isn’t real you know ME is all […]
ME AND MY LIST The eyes they slowly open A restless night behind Sleep didn’t want to come my way To rest my buzzing mind I gently rise to find my feet Hope the strength is there to greet My legs like stilts, …..no feeling I fall,…… to stare up at the […]
Listen To ME Good morning television My company for the day I hope you haven’t missed me While I’ve been away I’ve been in bed, not well you see There’s a big long word But we call it M.E. Used to be out there Working and doing ‘stuff’ Then one day, whilst […]
Holidays And ME It seems so weird to need a break “You’re on a constant one for goodness sake” So with these words sunk to the hilt I book it up, so full of guilt. I need a rest just from the packing Lots of breaks as energy’s lacking Just the thought […]
Millions Missing Tommy missing from the five a sides A different postman today Jenny not out, not seen her about Maybe she’s just gone away No Mary at the Bingo Charlie, where is that guy? Rang the teacher, couldn’t reach her Didn’t wonder why Jack from the pub Hayley down at the club That […]
THE BANK OF ME In life you live within your means You save to manage all your dreams Paying back any debts you owe Trying to keep your spending low Then life hits us with ME It sets our fogged minds racing How to cope, our only hope To save our strength […]
The eyes they slowly open A restless night behind Sleep didn’t want to come my way To rest my buzzing mind I gently rise to find my feet Hope the strength is there to greet My legs like stilts, …..no feeling I fall,…… to stare up at the ceiling It’s gonna be […]
I want to Chat And things like that Like we used to do It hurts to talk It pains to walk But I’ll get myself to you. I’ll get there, it’s not that far Travel by bus, too tough by car Vibrations turn senses into mire The slightest bump, the more I tire […]
I thought I was being followed Maybe being stalked I saw him running in the park As I just slowly walked I saw him through the window I saw him in the crowd Full of cheer, having a beer, In that pub that’s now too loud I saw him at the […]
LIVING LIFE ‘LIGHT’ WITH ME When ME strikes We know the score Our lives won’t be As they were before We learn to pace Wind things down Cut things out Try not to drown Living on the edge of fun As if your life is all but done In the shadows, out of sight Living […]
Well the decorations are up, so it must be getting near to Christmas ! Maybe time to push this one out….I’m sure you’ll know the tune……. ME.rry Christmas ! On the first day of illness My ME gave to me A shrug from my local GP On the second day of illness My […]
Edit Hello, Is It ME You’re Looking For ? I’m sure you know the feeling I’m sure you know the score Hit with ME, you soon get to see How things are not as before I hoped my friends would stay with me I seriously thought they would I thought that they’d […]
TALK TO ME….BUT SLOWLY I used to love the banter Noisy bar room chat Then when the beastly ME hit It put a stop to that Noise is now my Kryptonite My Achilles’ heel is sound It’s not by choice That the tone of a voice Can knock me to the ground Crowds are […]
IT’S NOT YOU, IT’S ME When we first started out Wide eyed at the coming years We were so strong We just bowled along No worries, no cares, no fears. Now times have changed We’re growing apart Body and soul It’s breaking my heart It’s such a sad fact, You no longer […]
ME AND MY LIST The eyes they slowly open A restless night behind Sleep didn’t want to come my way To rest my buzzing mind I gently rise to find my feet Hope the strength is there to greet My legs like stilts, …..no feeling I fall,…… to stare up at the ceiling […]
When the beast descends we know the score Strength and hope go through the floor We’ve all been on this road before Another day of guilt Want to take my part in life Want to spend some time with wife Want to cause no further strife Another day of guilt Said I’d […]
If you wish to apply for a Blue Badge in the York area, or wish to know if you qualify, click on the link below:
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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.
The 15th Invest in ME Research International ME Conference 2020 - IIMEC15 - will take place on 30th May 2020 in London.
15 years of researchers, clinicians and patients interacting.
More details of the conference day will be announced in the coming months. It will be preceded by the 10th Invest in ME Research International Biomedical Research into ME Colloquium - BRMEC10 - a two day closed researchers' meeting with researchers from around the word, and the third year of a full day Thinking the Future - Young/ECR Conference for young and early career investigators.
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:
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.
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 aim is to share ideas in promoting various disability services, whilst continuing to raise Awareness of ME through both organisations. Through their #Think Access group and our own group, The York Access and Mobility Club, we will be looking at accessibility issues in the York & Harrogate areas, with the aim of advising on suggestions for change.
Disability Action Yorkshire aim to find solutions for disabled people whatever their aspirations. Whether you are a disabled person or support someone who is, they are here to support you. They provide a range of services, from training to accommodation and help with independence, among others. To find out more about Disability Action Yorkshire, click on the link below:
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 Fulford York, the details of your local PCSO are below, and he should be contacted in the first instance. If he is not on duty, you may be dealt with by whoever is on duty. If you live in other areas of York, ring 101 and ask for the PCSO covering your area. In all cases, you will be required to give as much information about the vehicle and location as possible. You will NOT need to stay by the vehicle till the police arrive.
Simon Hall
PCSO 5648
North NPT
NORTH YORKSHIRE POLICE
Dial 101, press option 2 and ask for him by his full name or collar number
If using his collar number please state each number individually
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:
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 !
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) is available on Amazon and iTunes and through the Unrest UK Store on DVD and Blu-Ray by clicking on this link: Unrest site
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.
To go to the Government's Disability Benefits Advice Guide, click on the link below:
Mike Harley is a very special guy who's aim was to run a marathon in each EU country to raise awareness and funds for Invest in ME Research. Please visit his site to learn more, especially since our exit from the EU has meant a revision of his plans !
The Changing Places Consortium launched its campaign in 2006 on behalf of the over 1/4 of a million people who cannot use standard accessible toilets. This includes people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, as well as older people.
To use the toilet in safety and comfort, many people need to be able to access a Changing Places, which have more space and the right equipment, including a height adjustable changing bench and a hoist.
To find out more, click on the link below to go to the Changing Places website.
The York Access and Mobility Club 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 !
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Accessibility
Dial & Ride: 01904 551441
Shopmobility: 01904 679222
York Wheels: 01904 630080
Helplines
NHS Health Enquiries (non emergency): 111
Samaritans: 01904 655888
York Hospital: 01904 631313
Patient Transport Service: 01904 630080
Benefits Service: 01904 551556
Local MP's
York Central Rachel Maskell: 01904 784847
York Outer Julian Sturdy: 01904 784847
Thirsk & Malton Kevin Hollinrake: 01347 666880
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.
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.
To order the book through Jessica's site, click on the link below:
This book is also now available at York Library
This is open to any business, club, pub, or organisation looking to have a bit of fun whilst supporting your local community. Our 4th season is well under way and going great guns ! 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 tab at the top of the site for more information, or just to register your interest through the email address supplied.
To read the ME Research Summary 2019 by ME Action covering the last ten years, click on the link below:
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 |
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:
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 !
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.
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.
