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. […]
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 David Tuller, DrPH I have sent the following letter to Dr Fiona Godlee, editorial director of BMJ, about Archives of Disease in Childhood’s egregious decision to re-publish Bristol University’s Lightning Process trial with the original findings intact. Given the Bristol team’s flagrant methodological violations, the journal should have retracted the paper. […]
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 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 […]
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 […]
From the How To Get On Blog. We are taught that exercise is supposed to make us feel better. Staying active is supposed to make us healthier. Getting out of bed is supposed to improve our quality of life. Sadly, for people with Myalgic Encephalomyelitis or “Chronic Fatigue Syndrome,” the opposite can […]
By Jo Moss in A Journey Through The Fog. Having a chronic illness means everyday tasks can be challenging, exhausting and painful. But there are steps we can take to make life easier, to limit the stress caused and to conserve our energy for more enjoyable activities. Here are some practical solutions to […]
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 […]
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 […]
With today’s terrible discovery, that’s five lives lost in the river Ouse in York in the last two weeks. The police and river rescue teams have also seen individuals walking along the walls of various bridges over the river, and only luck has saved them being added to this total. With another weekend […]
By Rachel Moss in Huffpost. The amount of opioids doctors are prescribing patients has significantly increased over the past decade, potentially contributing to the rise of opioid misuse and addiction, new research suggests. Worldwide, the use of prescription opioid painkillers more than doubled between 2001 and 2013. The researchers said in some […]
By John Pring in Disability News Service. The Department for Work and Pensions (DWP) destroyed a damaging internal report about its failure to ensure the safety of benefit claimants in jobcentres, preventing it being released under freedom of information laws. The report into safeguarding failures in south London jobcentres was written […]
By Chloe Laversuch in YorkMix. Cyber crime in York has increased by nearly 85 per cent in the past year – because it is seen as a wealthy area with “less tech-savvy” residents, according to police. Assistant chief constable Ciaron Irvine told a meeting that there has been a “significant increase” in scams – particularly […]
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 John McDermid in The Conversation. The recent announcement that EU rules for fitting speed limiters to new cars from 2022 will be adopted by the UK was welcomed by many, including the European Transport Safety Council, as a move that will save lives. However, not everyone is convinced by this “guardian angel” technology. […]
By Dave Flett in The Press. HE once tackled the likes of Ryan Giggs and Anders Limpar for the Minstermen, but Andy McMillan is now hoping to stop the city’s germs and bacteria in their tracks. The York City legend is taking a break from football to concentrate on an exciting new business […]
By Luke John Smith in The Express. MOTORISTS in the UK are required to inform the DVLA about a number of medical conditions as they could affect the way you drive and you could be fined £1,000 if you fail to do so. Motorists could receive a fine of up to £1,000 for […]
By Simon Walton in York Press. Fraudsters are sending fake emails claiming to be from City of York Council. The scam messages purport to be about council tax refunds – but they are trying to trick people into sharing confidential data. A spokesperson for City of York Council said: “Scammers are sending fake […]
Many people don’t give their workplace health and safety a second thought each day, but there are more than likely many dangers that surround you and your colleagues, such as trip hazards and work-related stress. While your boss has a duty of care to protect you onsite, it’s also up to a company’s employees to […]
From Yorkmix. That’s the message from York Cycle Campaign – which says the plans to dual York’s outer ring-road offer a unique opportunity to create cycle superhighways into the centre of the city. The campaign says City of York Council’s ambition to draw traffic away from the centre of York means road […]
By Mattew Smith in The Conversation. The recent inquest into the death of Natasha Ednan-Laperouse from anaphylaxis after eating a Pret A Manger baguette she was unaware contained sesame, could lead to a change in labelling legislation. Indeed, a recent investigation found that undeclared allergens were present in a quarter of foods sampled. But a more fundamental issue […]
By Tom Kindlon in Journal of Health Psychology. Abstract Reporting of harms was much better in the PACE (Pacing, graded Activity, and Cognitive behavioural therapy: a randomised Evaluation) trial than earlier chronic fatigue syndrome trials of graded exercise therapy and cognitive behavioural therapy. However, some issues remain. The trial’s poor results on objective measures […]
From Sainsbury’s website. Sainsbury’s has announced the extension of a new trial to help enhance the shopping experience for customers with hidden disabilities. The trial enables customers with hidden disabilities to collect a lanyard which indicates to colleagues that extra support is needed Following a successful launch at Sainsbury’s Barnstaple store, the […]
From BBC News. More than £500 m was stolen from customers of British banks in the first half of 2018, figures have shown. Industry group UK Finance said £145 m of that was due to authorised push payment (APP) scams, in which people are conned into sending money to another account. But £358 m […]
By Felicity Nelson in Medical Republic. NICE’s clinical guidelines still recommend potentially damaging treatments for chronic fatigue syndrome, but they won’t be updated until 2020. The 2007 NICE guidelines currently recommend the use of graded exercise therapy (GET), a treatment that only helps a minority of patients and can cause significant harm in some […]
By Shelley Webb, Senior Products Contributing Editor in Consumer Affairs. People who have trouble navigating stairs due to injury or disability, including those who can no longer walk at all, may be able to take advantage of stairlifts. Stairlifts allow users to sit comfortably in a seat that takes them up the steps using the […]
By Luke Bailey in iNews. The research was carried out before the summer heatwaves that sent temperatures in the UK and other parts of the world soaring this year. The next four years are likely to see more global heatwaves, say scientists in research from before the 2018 heatwave hit. The researchers were looking […]
From The Financial Conduct Authority. Don’t let a scammer enjoy your retirement – find out how pension scams work, how to avoid them and what to do if you suspect a scam. Pension scams can be hard to spot. Scammers can be articulate and financially knowledgeable, with credible-looking websites, testimonials and materials that are […]
by Katie Campbell in UNITE. Sara Jane Harvey, who blogs as Agony Autie, posted a startling and disturbing video on Thursday of her being thrown off a Northern train because she was using a mobility scooter. Sara, who underwent surgery two weeks ago and has a heart condition, Ehlers Danlos Syndrome and autism, was told […]
By Natasha Hinde in HUFFPOST. Another week, another influx of scorching weather. While it’s great news for those looking to spend their summer holiday in the UK, there are risks attached to heatwaves and dehydration is one of the major factors. Registered GP Dr Kenny Livingstone tells HuffPost UK he has received calls from “a lot more […]
-------------------------------------------------------
The first Monday of each month at 11 am - The York ME Community Coffee Club at Bar Convent, 17 Blossom Street, York.
---------------------------------------------------------
The third Wednesday of each month - at 2 pm - The York ME Community Coffee Club at The Novotel, York.
--------------------------------------------------------
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: