York Brewery has gone into administration, YorkMix can reveal today. Parent company Mitchells Of Lancaster (Brewers) Ltd have been put into administration, taking York Brewery Co Ltd with it. Staff at the Toft Green brewery were told this morning. It also owns three pubs in the city which are affected. A brewery spokesman told YorkMix: All I can […]
By Cort Johnson in Health Rising. It’s always hard to lose a loved one, but the deaths in ME/CFS seem particularly hard. They tend to be quite painful, they often take place in the midst of a non-supportive medical system, and they’re a complete mystery. With no seeming way out it’s no […]
By Eileen Rosenbloom in #MEAction. You might think aging with myalgic encephalomyelitis (ME) is a seamless dance where an illness catches up with a stage of life. As people age with their own set of ailments, you’d hope this latter stage would offer a welcome mat of normalcy. Our healthy peers would like us […]
A new book about the John Barry Seven is the definitive account of the composer’s early years. STEPHEN LEWIS reports in The Press. IN September 1957, a young rock and roll seven-piece calling themselves the John Barry Seven managed to land a much-sought-after audition on the BBC Light Programme, radio’s premier music outlet. It […]
From The National Association for ME patients. In January 2018 a tragedy occurred in Bjärred, a family found deceased in its villa. Today, the police reported that parents chose to end their own and daughters lives and that both girls had been diagnosed with ME. RME deeply deplores the tragic development, our thoughts go […]
By Suzan L. Jackson in ProHealth. Holiday season is upon us, and that fills me with dread because it means lots of visits with extended family who see us only rarely. Our invisible illnesses become even more invisible at these times. I have been able to improve my condition and my son’s greatly […]
By Cat Soave in The Press. History was made today at Catterick Garrison, when four monuments were unveiled to create a centrepiece to commemorate the fallen and marks the 100th anniversary of the Armisitice at the end of the First World War. Mr David Evans, of Leyburn, a former cavalryman with the 13th/18th Royal […]
By Amy Proal and Trevor Marshall in Frontiers in Pediatrics. The illness ME/CFS has been repeatedly tied to infectious agents such as Epstein Barr Virus. Expanding research on the human microbiome now allows ME/CFS-associated pathogens to be studied as interacting members of human microbiome communities. Humans harbor these vast ecosystems of […]
By Stefano Hatfield in iNews. “Come in,” said our jovial, generous host. “Take your coats off, have fun, get smashed.” Words I imagine have been said across Britain this weekend as festive party season truly kicks in. Except that you could swap “smashed” for trollied, trashed, pissed, or any other of the other euphemisms […]
By Kae Kawanishi in malasiakini. Saving the tiger will ensure that future generations continue benefiting from a healthy ecosystem. The extinction of the charismatic top predator, however, is just one indication of humans’ misplaced priorities and short-sightedness destroying our only home. The Malayan tiger (Panthera tigris jacksoni) is about to go extinct in the wild. Because […]
By John Pring in Disability News Service. A disabled crossbench peer has called on the government to start handing out “heavy fines” to the air travel industry when it fails to ensure that its services are accessible to disabled passengers. Baroness [Jane] Campbell asked the government on Monday what action it was taking to encourage all UK […]
By Sabrina Rau in The Conversation. Have you noticed the increasing number of pop-ups asking you to consent or “agree” when you visit a website? Do you find these annoying and tend to just click accept without reading the policies? So do most people, and here’s why that’s a problem. By “agreeing” to any of […]
By Frank NM Twisk in World Journal of Methodology. Abstract Although myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are considered to be synonymous, the definitional criteria for ME and CFS define two distinct, partially overlapping, clinical entities. ME, whether defined by the original criteria or by the recently proposed criteria, is not equivalent […]
By John Pring in Disability News Service. The government could be forced into court to defend its failure to make the much-criticised universal credit benefit system accessible to disabled people. A parliamentary meeting held to mark the International Day of Persons with Disabilities (IDPD) on Monday – and to call for universal credit […]
By Sid Hayns-Worthington in the Swindon Advertiser. The society’s Employee Disability Network organised sessions at the HQ to have open conversations about obsessive compulsive disorder, dementia, understanding anxiety and stress, and also included a mental health resilience workshop. The company held around 35 events across the country, coinciding with International Day of Persons with Disabilities […]
From BBC News. The boss of Motability Operations is to step down by 2020 following criticism over his pay and a scathing review from the government’s spending watchdog. The report from the National Audit Office revealed Mike Betts was in line for an extra £1.86m bonus on top of already “generous” pay. The […]
By Jennie Spotila, in the Inquirer. I recently went to a new doctor. He looked over my chart: “Chronic fatigue syndrome,” he read, and then he glanced up at me. “You don’t look tired,” he quipped. “There, I made it go away.” I’ve been sick for 24 years, and I get comments like […]
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 Cort Johnson in Health Rising. Could the microvascular system – the small capillaries and the red blood cells that run through them – hold the key to energy problems in chronic fatigue syndrome (ME/CFS) and perhaps fibromyalgia? The idea that the blood delivery system – not some metabolic derangement per se – is […]
By Laura Collins and Lucy Robinson in ABCNews Australia. Living in an Australian society that understands and accepts all forms of disability is no longer a pipedream for New South Wales woman Marni Walkerden. Ms Walkerden is the brains behind the Think Outside the Chair campaign, which is launching in the NSW central […]
By Megi Rychlikova in The Press. For seven months, experts worked in secret to excavate two barrows near the East Yorkshire town. Each was constructed more than 2,000 years ago. Inside one was the only Iron Age chariot with standing horses found in Britain and the body of a warrior in his late 40s […]
By Cort Johnson in Health Rising. Having any disease is scary, but having chronic fatigue syndrome (ME/CFS) and/or fibromyalgia (FM) often adds a hefty dose of confusion and bewilderment to that fear. Not only are people with ME/CFS and FM typically exhausted and in pain, but problems with short-term memory and information processing […]
By Eliana M. Lacerda et al in Frontiers in Neurology. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling disease characterized by unexplained incapacitating fatigue, accompanied by variable multi-systemic symptoms. ME/CFS causes a significant personal and public health burden, and urgently requires the coordination of research efforts to investigate its etiology and pathophysiology and to develop […]
Well the decorations are up, so it must be getting near to Christmas ! Maybe time to push this one out….I’m sure you’ll know the tune……. ME.rry Christmas ! On the first day of illness My ME gave to me A shrug from my local GP On the second day of illness My […]
By David Tuller, DrPH. In what can only be characterized as a welcome surprise, Cochrane has rejected the revision of a 2014 review of exercise treatments for chronic fatigue syndrome, stating that the work does not meet the organization’s “quality standards.” Cochrane revealed the decision late Friday in a statement appended to the review, which itself […]
From Hobby Help. If you’re keen to get into Astronomy, you’re participating in one of the oldest human traditions. Depictions of the cosmos range back far into human history, and almost certainly into pre-history. People from the Greeks to the Chinese to the Mayans looked up at the night sky and derived forms of […]
By Tamsin Kelly, Commercial Writer in Huffpost. It’s 11 years since contactless cards were first launched back in 2007. At the time, they were a niche product only available from one card issuer in a handful of London postcodes. Today contactless has dramatically changed the way we spend money with the majority of […]
By Kaisha Holloway in The Mighty. When being “tired” is more than just feeling tired… Don’t you just hate it when people try to get one up on you, by always striving to be worse off than yourself? Don’t you just hate it when people assume that tiredness is the same for […]
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 ME Australia. by Sasha Nimmo Australia’s Health Minister, Greg Hunt, listened to people with Myalgic Encephalomyelitis (ME), families, scientists and organisations. Minister Hunt had a second meeting with ME Australia, along with Prof Paul Fisher, head of microbiology at La Trobe University and Dr Heidi Nicholl, Emerge Australia on Thursday. ME Australia […]
By Gracie Bonds Staples, The Atlanta Journal-Constitution. Chronic fatigue syndrome. For more than two decades, those three words have consumed Liz Burlingame because, well, words mean something. They convey feelings and connote action. They can comfort or cause pain. They can be our best friend or our worst enemy, failing us completely. That’s how Burlingame […]
By Sam Meadows in The Telegraph. More than a million households may be unable to benefit from the new breed of fully switchable smart meters, it has emerged. The £11bn smart meter roll-out, promoted by celebrities including Kirstie Allsopp has seen more than 12 million installed, but has been dogged by issues of meters “going […]
Written by Ronald W. Davis, PhD in ME Action. This paper documents that red blood cells are less deformable in ME/CFS patients compared to healthy controls. It potentially could be a biomarker, and we are proceeding to design new devices that will make a clear distinction between patients and healthy controls. These devices will be […]
By John Pring in Disability News Service. The government department responsible for running the Disability Confident employment scheme has admitted failing to keep track of how many complaints of disability discrimination are made by its own staff. The Department for Work and Pensions (DWP) repeatedly brags about its much-criticised scheme, which aims to help employers recruit […]
Wed 19 Dec at 2 pm - Coffee Club, Novotel York.
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April 2019 (Date tbc) - The York Inset Scooter Club will be setting off on their annual Mods and Rockers Charity Ride Out from York to the coast in aid of The York ME Community.
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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:
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.
Looking after your Accessibility Holiday needs with escorted coach tours with qualified care teams. To find out more, click on the link below:
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:
The Sandbag Times is an Online Magazine written by Veterans for Veterans
which brings you all the latest national and international Armed Forces and Veterans news. With insights each week into Veterans Charities, organisations, events and lots more. It also supports the work being done by The York ME Community.
To keep in touch with all things military, 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 have agreed to support The York ME Community.
They will head off from The York Eye (Clifford’s Tower) on a run out to the coast, and be 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. The picture shows the club gathering before last year’s Charity Ride Out. More details will be given nearer the time, and will be highlighted on this site.
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 help raise ME Awareness in your local area, have a look at the tab at the top of the site for more information.
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.
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 !
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, has been released to mark and support ME Awareness Day, 12 May 2018.
It’s 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:
DisabledGo in York provides information on Shopmobility, Talking Signs, Dial & Ride, York Wheels and accessible Public Toilets in our city. To find out more before setting off for York, 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…)