By John Pring in Disability News Service. The government’s continuing failure to produce accessible information and guidance to help disabled people protect themselves during the coronavirus crisis is unacceptable and will cost lives, disabled people’s organisations have warned. Disabled campaigners spoke out after the Department of Health and Social Care (DHSC) failed […]
By John Pring in Disability News Service. A local authority apparently told its social workers to “stop all their usual work” until the coronavirus crisis was over, even before emergency powers to reduce their duties under the Care Act became law. The controversial Coronavirus Act, which became law last Wednesday (25 March), suspended […]
BY BROOKE VITTIMBERG in Fast Company. When news of COVID-19 started to spread, there were two popular responses. The first was to rush to the store, buying N95 masks and hand sanitizer until shelves were bare. The second was to shrug and comfort the masses because mostly immunocompromised people—people like me—would die. On Twitter, […]
From YorkMix. Community spirit is alive and well in York in the time of Covid-19. Groups are being set up to help fellow residents affected by coranavirus. There is now a York Covid-19 Mutual Aid group, with the aim of supporting vulnerable people in the city through the outbreak. George Turner explained more on the […]
Welcome to the March 2020 news update for York Carers Centre. News Carers socials for 26 to 40 (ish) year olds We’re delighted to have received funding to offer socials for 26 to 40 year old carers in York. Our next one is at the Escape Room, Micklegate on Thursday 26 March early evening […]
From BBCNews. Lorna Bryson, 25, suffers from Myalgic Encephalomyelitis (ME) also known as chronic fatigue syndrome. The illness means she has a low immune system, gets headaches, sore muscles and joints, and needs at least 12 hours sleep every night. Doctors didn’t believe there was anything wrong with Lorna growing up as she […]
By John Pring in Disability News Service. The MP leading the race to be Labour’s next leader has become the first candidate to back calls by disabled people’s groups for the introduction of free social care, funded by national progressive taxation. Sir Keir Starmer, Labour’s shadow Brexit secretary, said he supported the motion passed […]
By Liz Johnsin in The Independent. It’s great that major brands are getting serious about inclusion, but initiatives should focus on taking away barriers, rather than forcing marginalised groups to mark out their difference. Sunflower season may be over but Sainsbury’s wants to see more in bloom this autumn following its latest announcement. On […]
By Mark Savage in BBC News. For years, deaf and disabled music fans have faced huge barriers when it comes to booking concert tickets. Whether it’s the requirement to call premium rate help lines, or having to provide evidence of their disabilities, the experience has put many fans off. Now Ticketmaster is introducing […]
By Carrol Baker in kidspot. Once bright and energetic 12-year-old Ethan struggled to get out of bed in the morning. But, as his mum Shelley says, that was just the beginning. At first, doctors prescribed bed rest. They thought it was a virus and they said you can’t really do anything for a virus, he’ll just […]
By Ryan Prior, CNN. (CNN)Multiple times a day, every day, Ron Davis sits with his head bowed, waiting outside his son’s bedroom for a subtle signal that it’s all right to come in. He opens the door to the space where Whitney has spent most of the last decade. Whitney lies motionless on […]
By Rebecca Renner in Forge. When my dad was diagnosed with colon cancer at age 52, I was flooded with emails, calls, and in-person pep talks from friends and acquaintances. Anyone who’d ever met me, it seemed, was eager to offer up a platitude. “Think positive,” they told me. “It will be okay. […]
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 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 Greg Crowhurst in ME Support. Linda, my wife, collapsed over two decades ago and very quickly became bed bound. In the months leading up to her collapse, she had had several operations and a long chest infection. For almost two years prior to that she was in constant pain, experiencing severe pins and […]
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 […]
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 […]
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 John Pring in Disability News Service. An airline has been forced to apologise to a disabled woman after it charged her extra to reserve a seat next to her for her carer, and then refused to refund the charge. Helen Jenkins had informed Flybe when she was booking her return flights […]
By John Pring in Disability News Service. Disabled entrepreneurs with technology-based business ideas that could transform life for other disabled people have a chance to secure up to £100,000 of funding through an “angel” investment programme. Entrepreneur and investor Rohan Silva, a former senior policy adviser to Conservative prime minister David Cameron, […]
From Utting-Wolff Spouts. When children don’t get well, when there is no adequate treatment, and they remain ill, we need to step in and fight for their right to be part of society. When children don’t get well, time passes by, sometimes like treacle, sometimes quickly, with the realisation that another school year has whipped […]
From Heathrow.com. At Heathrow we understand all passengers are unique and we offer different levels of support tailored to your needs. For a hidden disability such as autism, dementia or anxiety, help is always at hand at the airport. If you would like to book assistance just let your airline know 48 […]
From BBC News. A woman with chronic fatigue syndrome has accused Manchester Airport of treating her like “cargo” and “cattle” following a long-haul flight. Jessica Stafford, 29, booked a special assistance service as she needed help to move through the airport. But she found the experience “distressing” and “humiliating” after being asked […]
By Adam Schembri and Kearsy Cormier in The Conversation. There are many different ways of speaking English in the UK, with people using different regional dialects in different parts of the country. For example, some people would say “give it me” while others might say “give it to me”. There is also variation in the names […]
But Natasha Lipman. I can’t believe that it has almost been a year since I finally bought my first ever powerchair, the Rascal P321 (also called my ‘Mario Kart’ or ‘The Dizzy Rascal’ by my friends – cos I have PoTS and am always dizzy, gettit?) It truly was a long time coming, and […]
By Adriane Tillman in #MEAction. Exercise protocols prescribed for myalgic encephalomyelitis (ME) were powerful enough for Cherry to ignore the physiological realities of her disease. Cherry is now 100 percent bedridden. When 16-year-old Cherry from North London began the treatment prescribed for her myalgic encephalomyelitis (ME) in 2013, she was able to walk […]
By Corina Duyn in the journal.ie. I have been ill with Myalgic Encephalomyelitis (ME) for 20 years. But it is only in the last year, and especially in the past six months that my most basic needs are not being met – at a time when my illness has become more severe and […]
By Paul James. I’m not writing this for me, I’m not writing this for Amy my wife either, today I was made aware of a lady who suffers not only from ME but also from her family’s disbelief and ignorance – so this is for her. I need however, to start with […]
At this time of year we hear the cry go up for keeping in touch with family and friends. Maybe to also call on someone elderly nearby. Whilst I totally agree with these sentiments, maybe we should be doing this throughout the year. It’s too easy to forget those who were in our […]
By Jo Aldridge in The Conversation. Most children look forward to the Christmas holidays as a time for fun and families. But for some young carers – children who provide care for someone in their family who is ill or disabled – the Christmas holidays are a mixed blessing. Dani* is one […]
From York Carers Centre. We have a free discount card for carers in York that can save you money at nearly 50 local businesses. A wide range of shops, services, restaurants and gyms are taking part. Discounts vary from business to business but are usually between 10% and 30% off. A full list of […]
The Carers Assessment of Need clinic for January listed in the newsletter and What’s On guide has had to change date due to venue. It will now be on Tuesday 22 January instead of 29 January. The time and venue remain the same, 10am to 12pm at York CVS.
It occurred to Pooh and Piglet that they hadn’t heard from Eeyore for several days, so they put on their hats and coats and trotted across the Hundred Acre Wood to Eeyore’s stick house. Inside the house was Eeyore. “Hello Eeyore,” said Pooh. “Hello Pooh. Hello Piglet,” said Eeyore, in a Glum […]
MEpedia is a project founded by MEAction, powered by the patient community, and built by volunteers including patients, students, and researchers. We are crowd-sourcing a knowledge base on the history, science and medicine of ME, CFS, and related diseases. Jump in by clicking on the link below:
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.
We are a group of physiotherapists in the United Kingdom with a special interest in Myalgic Encephalomyelitis (ME).
Our website provides resources for physiotherapists, people with ME and parents or carers of those with ME.
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:
![old-telephone[1]](http://www.york-me-community.org/wp-content/uploads/2015/10/old-telephone1-300x240.jpg)
Helplines
COVID-19 Helpline for York - 01904 551550
or email: covid19help@york.gov.uk
NHS Health Enquiries (non emergency): 111
Samaritans: 01904 655888
Mind UK: 03001 233 393
Domestic Abuse: 03000 100 110
York Hospital: 01904 631313
Patient Transport Service: 01904 630080
Benefits Service: 01904 551556
Accessibility
Dial & Ride: 01904 551441
Shopmobility: 01904 679222
York Wheels: 01904 630080
Delivery Services
Virtual High St: www.yorkhighstreet.com
Alligator Wholefoods: 01904 654 525
Millie's Greengrocers: 07766 313 122
Food Circle: 07511 717 946
Miller Food Service: 01904 655 368
Poppy Caterers: 01347 878 628
Sheila's Greengrocers: 07470 308 824
M&K Butchers: 01904 639 300
Badger Hill Butchers: 01904 411 897
Burnholme Fisheries: 01904 421 360
Milk (Richard Cann): 07773 348 354
Services
York Electricians Ltd: 01904 373 045
Plumbtech: 07703 567 027
Yorkshire Plumbing: 08006 125 234
Local MP's
York Central Rachel Maskell: 01904 784847
York Outer Julian Sturdy: 01904 784847
Thirsk & Malton Kevin Hollinrake: 01347 666880
Councillor Keith Aspden: 01904 555 314
If you are a member of the elderly community or indeed somebody caring for an elderly person, this guide supplied by Covonia will give you important information on how to avoid getting sick, and how to care for coughs and colds should they happen.
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 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 !
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.
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 !
