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 […]
By Howard Berry in The Conversation. It’s been half a century since the magnificent Apollo 11 moon landing, yet many people still don’t believe it actually happened. Conspiracy theories about the event dating back to the 1970s are in fact more popular than ever. A common theory is that film director Stanley Kubrick […]
By Serena Coady in The Metro. Ever felt the sting of a backhanded compliment? Perhaps you’ve been told that your English is ‘surprisingly’ good, or that you’re funny… ‘for a woman’. A new Twitter hashtag, #DisabledCompliments, is highlighting that veiled insults are sometimes a daily reality for people with a disability. The viral […]
By Newsroom24. Bees are often seen as one of humanity’s biggest enemies, and yet they help to keep us alive. You don’t have to be a tree hugger to respect the environment that you live in. For two million years, before the agricultural revolution, humans foraged the land and brought thousands of species […]
By Tim Cooper in Forces Network. Veterans are being given the chance to restore part of a historic fort in Eastney, on the south-eastern tip of Portsmouth. Built in the 1700s, Fort Cumberland was originally used to defend the Naval Base from a landward attack and stayed in military service until the 1970s. […]
THE SALFORD PALS Waiting for the whistle blast In a war they said would never last The counting down from ten begun Nervous feet on the bottom rung From the bowels of their dirty trench Leaving safety, leaving stench Thiepval Wood the final plan The aim of every Salford man The Pals as one rose […]
By John Pring in Disability News Service. Disabled people’s organisations have reacted with suspicion and some hostility to the outgoing prime minister’s attempt to shore up her “legacy” with a series of disability-related announcements. Although some of the measures announced by Theresa May (pictured) were welcomed, many user-led organisations questioned why she had left […]
Yesterday I read a report that there’s been a big breakthrough in curing male pattern baldness in America. Research in 2016 showed that the US was putting six times the funding into baldness research than that put into research into Myalgic Encephalomyelitis (ME). Absolutely astonishing that vanity should come before an illness that kills […]
By YorkMix in Entertainment, Music Shakespeare’s Rose Theatre has opened, bring four new plays to the pop-up theatre in the shadow of Clifford’s Tower. Running from Tuesday 25 June – Sunday 1 September 2019, the programme features Hamlet, Henry V, The Tempest and Twelfth Night. It was opened by the York Town Crier Ben Fry and Linda Fenwick, High Sheriff of North […]
By Alice Tidey in euronews. As Europe braces for another heatwave with highs expected to reach between 35C and 40C, some might take solace from the fact that these temperatures remain well below the region’s record. The highest temperature ever recorded on European soil was 48C. It was observed in Greece in 1977. Some 17 […]
From Minster FM. The iconic steam engine Flying Scotsman will be visiting North Yorkshire this weekend but those who are going to see it are urged to do so safely. This Saturday, the 29th June, the steam engine will travel up the Midland Main Line before heading to York. Enthusiasts are expected to be […]
From The Yorkshire Times. New figures, launched today, show that three-quarters of guide dog owners (76%) have been illegally turned away by businesses and services, such as taxis, restaurants, shops, cafes, hotels and pubs. As well as being contrary to the Equality Act 2010, these access refusals have now been shown to have […]
From YorkMix. A huge expansion of York Designer Outlet could bring 25 new shops and restaurants to the centre. Owners McArthurGlen say the development will create around 500 retail and construction jobs “and £3.6 million in additional employment income”. The plans also include 630 additional parking spaces and an improved Park & Ride […]
NKS stands for ‘THE NATIONAL KEY SCHEME’! As the name suggests, located all around Britain, there are over 10,000 accessible toilets for disabled people, in public as well as commercial properties of all sorts, which are part of the scheme. The scheme also includes over 1000 Changing Places toilets, which have added specialist […]
Fulford Beer & Music Festival Saturday 22nd June 2019 From 2pm to Sunset Fulford Sports Pavilion The Parish Field (off Fulfordgate) YO10 4LY • Over 15 local real ales, craft lagers and ciders • Live music from local bands • BBQ, snacks and soft drinks Main sponsor: £4* ADVANCE £5* ON DOOR * Includes […]
By Ellie Fry in The Independent. Like many young carers, I can’t tell you the exact moment my mum got sick. Nor can I pinpoint the moment I started helping her and my family get through day-to-day life. But there was a moment, 10 years ago, when my mother went from healthy to bed […]
By Niia Nikolova and Nick Wade in The Conversation. Humans are fascinated by visual illusions, which occur when there is a mismatch between the pattern of light that falls on the retina, and what we perceive. Before books, films, and the internet allowed illusions to be shared widely, people were captivated by illusions in nature. Indeed, it is […]
By Sophie Morgan in The Independent. Television presenter Sophie Morgan is calling on airlines to offer concessions for disabled travellers after she was left without means of moving “short of dragging herself along the floor” on a British Airways flight. Ms Morgan, who was paralysed in a car crash when she was 18 and uses a wheelchair, […]
Written by Euan MacDonald MBE, Co-founder, Euan’s Guide. Everyone knows that technology is making our lives easier – from the mobile phones in our pockets, the handy birthday reminders from a certain social network, to the lifesaving data records held by hospitals. However, something that might not be so obvious to businesses is […]
By Paige Wyant in The Mighty. Music is often a source of comfort and emotional healing. Many people with chronic illness in particular find that certain songs or genres can be powerful in helping distract them from symptoms and cope with all the stresses and frustrations of life with a health condition. For Mighty […]
From YorkMix. York St Mary’s will reopen next month – showcasing some of the world’s greatest artworks as you’ve never seen them before. Van Gogh: The Immersive Experience brings the Dutch master’s paintings to life. Huge animated projections allow you to step inside the art. It opens at the Coppergate venue on […]
The York Mobility Scooter Club has been set up as a Facebook Group with the idea of being somewhere for anyone in the York area to talk about all things mobility scooters. From those first steps of being so wary of taking that first step of admitting that you need help, to the […]
From YorkMix. After one false start and a lot of anticipation, York now has its very first cat café. The Cat’s Whiskers opened a few days ago in a listed three-storey building on Goodramgate. Complete with 11 cats, including Freddie and Teddy, Simba, Bear and Snowy and Olaf – who are both deaf – the café […]
From The Yorkshire Times. Farms across Yorkshire and the UK will be throwing open their gates on 9 June as they welcome the public for Open Farm Sunday. In the North York Moors National Park, Stonebeck Gate Farm at Little Fryup, near Danby, will be giving visitors the opportunity to experience life on […]
York Carers Centre news Thank You Volunteers It’s National Volunteers Week and we’d like to say a huge thank you to all of our committed volunteers, who generously offer their skills and time to help carers in York. From the board of trustees and office volunteers to those who help carers at groups across the […]
By Chris Rojek in The Conversation. Former social media influencer and “wellness guru” Belle Gibson first caught public attention after claiming she cured herself of terminal cancer by rejecting conventional medicine in favour of a healthy diet and lifestyle. Her story was documented on a blog and social media, which became the basis for a successful book and […]
From YorkMix. Coney Street will soon look even more folorn as two more big names go. Burton and Dorothy Perkins are set to close in York, two of 23 stores in the UK and Ireland being axed by Sir Philip Green’s Arcadia Group. Part of a rescue plan, the closures put 520 jobs at […]
By Daniel Tischer, Jamie Evan’s and Sara Davies in The Conversation. A future without cash seems almost inevitable. Recent statistics paint a damning picture: while cash accounted for 62% of all payments by volume in 2006, this dropped to 40% in just a decade and is predicted to fall yet further to 21% by 2026. […]
By Laurence Roope, Richard Smith and Sarah Wordsworth in The Conversation. Driven by widespread antibiotic use, bacterial infections are becoming increasingly resistant to treatment, and the pipeline for new antibiotics is running dry. Recent reports estimate that, without action, by 2050 resistance to antimicrobial drugs will cause up to 10m deaths a year globally and reduce […]
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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.
STOP PRESS: FULL DEBATE TO BE HELD IN PARLIAMENT ON THURSDAY 24TH JANUARY 2019
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 Mobility Scooter Club has been set up as a Facebook Group with the idea of being somewhere for anyone in the York area to talk about all things mobility scooters. From those first steps of being so wary of taking that first step of admitting that you need help, to the best scooter for individual needs. All reviews are welcomed !
It will also be where we can talk about accessibility issues in York for scooters, and if this develops into a strong theme, I may open a separate group on that subject.
My aim is also ideally in time to meet up for some sort of wheeled rambles, and so suggestions of sensible routes would be welcomed.
I don't aim to set many rules, just that we all support each other and lend a help when we can. Please feel free to invite others who are aiming to get a scooter, or have one, for whatever reason, and let's see where this little adventure takes 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.
Last season was a great success with 15 teams involved, and this season is going brilliantly with the aim of spreading ME Awareness. As a bonus, we have also raised £725.00 for Invest in ME Research.
This is a call out to all York Businesses, Clubs and Venues to put it in your diaries for next season and support your local ME Community.
To join in for next season and help raise ME Awareness in your local area, have a look at the tab at the top of the site for more information.
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: