From Purple. More than 13 million people in the UK – a fifth of the population – are disabled. A new poll of people who consider themselves to be disabled has found that more than half of respondents are struggling to make purchases of a product/service due to their disability. Disabled young people […]
By John Pring in Disability News Service. A committee of MPs has called on the government to ban parking on pavements, after hearing how the practice was putting disabled people all over the country in stressful, inconvenient and even dangerous situations. The Commons transport committee says in a new report that pavement parking […]
By Kate Bratskeir in The Huffington Post. There’s no real cure for the common cold, but a little bit of whiskey or bourbon (that’s a little bit, we said) could offer some relief. The classic hot toddy, typically made of whiskey, honey, lemon juice and hot water, can subdue the injustices of your inevitable winter cold. The hot […]
By Amber Blackburn in The Mighty. When it comes to social media, we often hear about the negative aspects of each platform –like the fact that social media is full of highlight reels rather than what’s actually real. We only get to see what influencers choose to show us, which is usually only the […]
By Ed Horner in York Press. AN ONLINE GP service in York has had its registration suspended after it was found to be putting patients at “risk of serious harm”. The Care Quality Commission (CQC) rated the care provided by Doc-OneStop to be ‘inadequate’, following an inspection carried out in July 2019. […]
From The Yorkshire Times. The government will work with the NHS to improve food quality in hospitals and provide consistently safe, nutritious and tasty food. The review will consider: 1. How food can help aid faster recovery, taking into account the unique needs of vulnerable groups 2. Support from national bodies such as […]
Just to let you know that this site will be down later this evening and overnight for required maintenance. Normal service will be resumed tomorrow !
By Calvin Barnett in Thiis. A new app giving disabled people the power to report parking infringements to their local councils is hoping to stop situations where people using mobility devices are forced to make unsafe manoeuvres to get past illegally parked vehicles. Developed by brother and sister team Alex Mühlhölzl, Chief Operating […]
As you may know, a consultation process is under way with regard to the revamping of Clifford’s Tower area of York. This week I was invited by English Heritage to add my input with regard to accessibility for the area. The revamp will include removing the car park currently alongside the tower, which is […]
By Gyles Brandreth in gyles brandreth.net. Enid Blyton is in the news once more. It has just been revealed that in 2016 the Royal Mint blocked a proposal to honour the celebrated children’s author with a commemorative 50p coin on the grounds that Blyton – the world’s most popular children’s author – was […]
By Chloe Laversuch in YorkMix. Permanent bollards could be installed on city centre streets to protect the area from terrorist attacks – if plans are approved by senior councillors. And the council will also work with the Counter Terrorism Unit to look at measures to protect Christmas shoppers this year. Permanent bollards will be installed […]
By Jo Verrent in Unlimited. Unlimited, in its current form, has been recruiting for disabled trainees since 2013. What have we learnt about accessible recruitment? Jo Verrent, Senior Producer for Unlimited, gives us her top ten tips… Target where you advertise – find out where disabled people might be, and go […]
From Independent Age. Many older people are missing out on thousands of pounds that they’re due. Our free guides can help you boost your income by claiming benefits you may not have realised you’re entitled to – even if you have savings or own your own home. To read the rest of this story, click […]
By John Pring in Disability News Service. More than half of passengers who describe themselves as having an impairment that limits their day-today activity find travelling by air difficult, according to a regulator’s annual report on access at the UK’s major airports. The Civil Aviation Authority’s (CAA) annual report on disability access contains […]
By Mike Laycock in The Press. AN ARCHAEOLOGIST claims planning conditions have been breached at York’s biggest current housing development on the site of the 1066 Battle of Fulford. Chas Jones said an interpretative trail of the Germany Beck site should have been created by developer Persimmon before the first of 650 new homes was occupied. […]
By Jo Verrent in Unlimited. Unlimited, in its current form, has been recruiting for disabled trainees since 2013. What have we learnt about accessible recruitment? Jo Verrent, Senior Producer for Unlimited, gives us her top ten tips… Target where you advertise – find out where disabled people might be, and go out of your […]
By Erik Pedersen in Deadline. The 50-page complaint (read it here) was filed Wednesday in Los Angeles Superior Court by defendants including Jamison Hill, Pilar Olave, Jill Edelstein and Bekah Dinnerstein. Referred to in the suit as “the Afflicted Four,” they claim they were “duped by Plaintiffs into participating in a salacious reality […]
By Ella Wills BBC News. Registered as blind for 15 years, Deborah Persaud travels around London with guide dog Lewis by her side. But on recent walks to work, the pair have faced a new challenge on pavements – dockless bikes for hire. “Lewis has to navigate around them [and] we often end up […]
By Jeremiah Johnson, Associate Professor of Environmental Engineering, North Carolina State University. Shared dockless electric scooters, or e-scooters, transport riders over short distances in cities. Ride share companies promote them as an environmentally friendly choice that reduces dependence on cars. To properly assess these claims, it’s important to consider all relevant environmental factors, including the materials and energy […]
By Hayley J. Fowler in The Conversation. “It’s hard to believe, isn’t it, that we had a heatwave just last week?” Those words were spoken by a BBC news presenter, in front of graphic images of fire service rescues, as heavy rain caused floods and landslides which closed many roads and railway lines. In […]
From YorkMix. York’s best and worst performing GP surgeries – as voted for by patients – have been revealed. The results of the annual NHS GP Patient Survey have been published. It asks patients for their views on issues like how easy it is to make an appointment how helpful receptionists […]
From YorkMix. Holiday firm Super Break, which has operated out of York since 1990, has ceased trading. Parent company the Malvern Group, which incorporates Superbreak Mini Holidays Limited as well as Manchester-based Late Rooms Limited, is insolvent. It issued a statement today (1 August), which said: We regret to advise that Superbreak Mini-Holidays Limited (trading […]
From YorkMix. A new law named after Claudia Lawrence is expected to help hundreds of families, allowing them to take control of their missing loved ones’ financial affairs. Named after chef Claudia, who vanished without a trace after leaving her York home a decade ago, Claudia’s Law came into force today Wednesday. Police […]
By Chloe Laversuch in YorkMix. Land next to Fulford Cemetery could be turned into a car park for construction vehicles while building work is carried out nearby. A planning application has been submitted for land off Fordlands Road to be used as a temporary car park until July 2020. A new care home is […]
From Euan’s Guide. Welcome to the first in a series of regular guest blogs by Zoe, a Euan’s Guide Ambassador, and her assistance dog Remus. The two live in Farlie on Scotland’s West Coast and the blog will focus on Zoe’s adventures using an all terrain mobility scooter. Part 1: A New […]
From YorkMix. It looks increasingly likely that pop star Ellie Goulding will marry her fiancé at York Minster next month. YorkMix understands that the cathedral is the hot favourite for the wedding between Ellie and her boyfriend Caspar Jopling. Jopling is a member of an aristocratic Yorkshire family, who live at Frickley […]
By Natasha Lipman. Hello and welcome to my new blog series “But Make It Accessible”, where I speak to brands that are working to create beautiful and stylish clothes that are also accessible. Rediscovering my love for fashion since becoming a wheelchair user has brought a lot of joy into my life, but […]
The York ME Community runs an Inter-Company Fantasy Football League sponsored by TGA Mobility. This is to help raise awareness of the illness that affects around 250,000 people in the UK, and 800 in the York area alone. Of those around York, 200 are likely to be severe, meaning house or bed bound. On the […]
By Natasha Hinde in HUFFPOST. If you’ve ever found yourself relentlessly pressing the call button to phone your GP, only to get beeped at before the call abruptly ends, you’re not alone. In fact, new figures show almost one in three people can’t get through to their GP by phone. Many of us have […]
By Rhiannon Williams in iNews. Disability-themed icons, a yawning face and a sloth are among the new characters to be released in honour of World Emoji Day. Apple has previewed a selection of emoji due for release in the autumn, including a range of inclusive disability-themed characters. The reveal coincides with World Emoji Day, an unofficial […]
By Stephanie Bateman in Doncaster Free Press. New research into parking prices across UK airports by My Late Deals reveals the huge variations in price consumers are paying. My Late Deals compared the cost of parking a car for two weeks during the summer holidays (5th – 19th August 2019) at an official airport […]
By Rory Cellan-Jones in BBC News. Should you be asking a voice-activated speaker intimate questions about your health? And is it important that the scientists behind AI systems actually understand how they work? These are two questions we seek to answer in this week’s Tech Tent podcast. Listen to the latest Tech Tent podcast on BBC […]
From YorkMix. A York woman has been jailed after taking nearly £600K from her employers. York woman jailed for £596,000 fraud against doctor’s practice Carolyn Lightwing, 55, of St Mary’s York, pleaded guilty to fraud by abuse of position after fraudulently transferring more than £596,000 from her former employers, Elvington Medical Practice, over […]
Just for no reason at all, I thought this might get your memories flickering……if you’re anywhere near my age ! When I Were A Lad When I were a lad Things weren’t so bad Despite living in black and white There was fun to be had And times were mad, Even if money […]
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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.
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.
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…)
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 !
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: