By John Pring in Disability News Service. Councils and other public bodies across England are failing to consult disabled people before approving “discriminatory” measures designed to aid social distancing and encourage cyclists and pedestrians, say campaigners. They have warned that public bodies are ignoring their duties under the Equality Act, and are making […]
By David Tuller, DrPH Professor Trudie Chalder is a lead investigator of a series of studies of rehabilitative interventions for so-called “medically unexplained symptoms” that have failed to meet expectations but have nevertheless been promoted as demonstrating treatment success. The piece of crap known as the PACE trial is a prime example. Most famously, Professor […]
From BBC News. Large accessible toilets for severely disabled people – known as Changing Places – will be made compulsory for new buildings in England from 2021. Shopping centres, supermarkets, sports and arts venues will be required to include at least one Changing Place, a government spokesman said. The facilities include hoists, changing benches […]
By David Tuller, DrPH. As post-covid syndrome has emerged as a major public health concern, so has the likelihood that members of the biopsychosocial ideological brigades will roll out their typical interventions for the “long-haulers”–patients suffering from profound exhaustion and other symptoms for many weeks and months after getting infected with the coronavirus. The […]
Just to let you know that The York Access and Mobility Club has been renamed The York Access Group. This group will be working with others in the York area to improve disability access to amenities in York, so that we can all enjoy our beautiful city to the full, and to not be restricted […]
By Emily J Hall, Anne Carter and Dan O’Neill in The Conversation. As temperatures begin to warm up, it might be tempting to take your dog for a long walk or run to soak up the weather while it lasts. But it’s important to exercise caution, as dogs can easily develop heatstroke in hot temperatures. […]
By Ruth Fairchild in The Conversation. A recent study found that brown and organic rice sold in the UK tends to contain significantly more arsenic than white inorganic varieties that are often considered less healthy. Arsenic is found in many foods but can be especially concentrated in rice, particularly in the husk, which is removed to […]
By Edzard Ernst in edzardernst.com. The Lightning Process (LP) is a commercial programme developed by Phil Parker based on ideas from osteopathy, life coaching and neuro-linguistic programming. It has been endorsed by celebrities like Martine McCutcheon and Esther Rantzen, who credits it for her daughter’s recovery from ME. Parker claims that LP works by teaching people to […]
ME AND MY LIST The eyes they slowly open A restless night behind Sleep didn’t want to come my way To rest my buzzing mind I gently rise to find my feet Hope the strength is there to greet My legs like stilts, …..no feeling I fall,…… to stare up at the ceiling It’s gonna […]
By David Tuller, DrPH. In this traumatic time, small victories should be savored. Last week, I noticed a tweet from patient and advocate Tom Kindlon about a pamphlet from the Oxford Health NHS Foundation Trust, the entity that oversees NHS services in the Oxford region. Other patients and advocates also flagged it on social media and sent […]
By Cort Johnson in Simmaron Research. The first SARS epidemic in 2003 featuring SARS-CoV now seems like a poor dress rehearsal for today’s SARS CoV-2 outbreak. With just 8,000 cases in total and 774 deaths, (compared to almost 1,000,000 cases and 4,000 plus deaths and rising rapidly) it seems hardly worth including in the same sentence. […]
By Cort Johnson in Health Rising. My, how things change. Less than a month ago, only 70 coronavirus cases had been reported in the country. Our president had just recently announced that the virus was under control. The sun was shining brightly. How naïve we all were. Just a month later, the U.S. leads the […]
From the Equality and Human Rights Commission. Equality law recognises that bringing about equality for disabled people may mean changing the way in which services are delivered, providing extra equipment and/or the removal of physical barriers. This is the ‘duty to make reasonable adjustments’. A duty is something someone must do, in this […]
By BY BONNIE EVIE GIFFORD in Happiful. Accessing public transport should be simple, shouldn’t it? Yet thousands face delays, inequalities in access, a lack of support and understanding. Enough is enough Whether we’re talking about your daily commute or venturing further afield, it’s hard to deny: travel can be stressful at the best of times. Overcrowding, […]
By Michael Cole in The Conversation. It is estimated that there is a staggering £300m worth of medicine unused in the UK every year. But is it safe to take these medicines if they are past their expiry date? Expiry dates are put in place after rigorous trialling and controlled experiments to ensure the safety […]
By John Pring in Disability News Service. A new book by a disabled researcher has detailed the “horrifying” levels of disability hate crime that take place every day on public transport across the UK. David Wilkin says the results of his research are “sometimes startling and almost always distressing” and illustrate the “ongoing […]
By John Pring in Disability News Service. A local authority has become the second in London to set up an independent, user-led commission to investigate the barriers faced by disabled residents. Lewisham Disabled People’s Commission (LDPC) will be led by disabled people and will examine organisational, attitudinal and physical barriers faced by disabled […]
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 Oliver van Hecke in The Conversation. GPs in the UK carry out over 300m patient consultations every year and at least a quarter of these deal with children. Almost two-thirds of such appointments are for coughs, sore throats, or earaches – illnesses which young children commonly get. Doctors and nurses group these types of illnesses […]
By Lee Bosher in The Conversation. Recent floods in England have been described as unprecedented or even “biblical” events, often with the misguided assumption that they were unavoidable or unpredictable. That is not the case. Over the past few decades, development practice in England has led to more than 300,000 homes being built in […]
By Heather Lacey in AccessAble. As the world becomes more and more connected, we are increasingly fortunate to have the potential to explore more of what the UK’s towns and cities have to offer. Getting out and about to enjoy the activities and attractions that our Towns and Cities have can be […]
By Cathy Adams in The Independent. Four in five disabled people have felt anxious about using public transport, according to a wide-ranging new study about disability and travel, while three in five have felt scared. Research from equality charity Scope shows that the majority of disabled people face problems when using public transport, with […]
By John Pring in Disability News Service. The Crown Prosecution Service has joined a leading disabled campaigner in raising concerns about a huge fall in the number of disability hate crime cases passed by police forces to prosecutors. The Crown Prosecution Service (CPS) annual hate crime report for 2018-19 revealed this week that […]
By Stuart Minting in The Press. FRESH laws are needed to tackle the problem of motorists parking on pavements – according to a council meeting. North Yorkshire County councillors were told residents including children, wheelchair users and pedestrians face significant issues created by inconsiderately parked cars. And that the problem was present in […]
By Lizzie Parry in The Sun. COMMON heartburn drugs sold over-the-counter have been urgently recalled – over fears they could contain cancer-causing chemicals. It’s the third major recall of its kind, six types of prescription-only Zantac were recalled earlier this month. Now, six more products have been added to the list, the Medicines and […]
By Pippa, in Life of Pippa. [AD] This piece is sponsored by CareCo Ltd and features affiliate links. More information can be found at the bottom of this post! Something that comes up a lot in conversation is how I negotiate living independently whilst dealing with long-term chronic fatigue. And whilst that’s […]
By David Tuller, DrPH A day of reckoning could be coming for Bristol University and Professor Esther Crawley, the ethically challenged pediatrician whose work has come under official scrutiny (that is, under scrutiny from people with greater authority than me) on multiple fronts. According to the Health Research Authority, the National Health Service unit […]
By John Pring in Disability News Service. Disabled people who experience repeated discrimination on public transport are being offered a camera to record video evidence for possible legal cases. Legal firm Fry Law, which specialises in disability discrimination cases, is hoping some of the evidence produced can then be used to bring cases […]
From BBC News. Shocking but not surprising is how one campaigner has described a rise in disability hate crimes. Research by learning disability charity United Response found there were more than 6,000 reported cases in 2018-19, a rise of just under 12% in a year. The police force area with the largest number was West […]
More Pavement Parking being reported. This at the bottom of Heslington Lane in Fulford, at a very busy junction, making things very dangerous for those in wheelchairs etc. Reported to local police.
PAVEMENT PARKING UPDATE FOR FULFORD AREA. Just to keep you up to date, I’ve received the following, and have asked to be kept in touch with any further action is taken, as their action must be proactive. If we call 101 as suggested, we can’t wait for the incident to be attended, as we […]
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 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. […]
There are so many questions banded about as to the story of Myalgic Encephalomyelitis (ME), but this video gives a better and fuller insight than most. Once you've watched it, please copy the link and spread the word to raise awareness. Thank you.
To watch this video, click on the link below:
To go to the Government's Disability Benefits Advice Guide, click on the link below:
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.
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.
This is open to any organisation looking to have a bit of fun whilst supporting your local community. Our 4th season is pretty much done ! 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 Fantasy Football League tab at the top of the site for more information, or just to register your interest through the email address supplied.
![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
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 !
