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 […]
By Laura McLean in The Mighty. Raising children with disabilities can be challenging and rewarding, often within the same day — or even hour. Our emotions as parents are complicated. We can simultaneously feel like giving up and also be ready to go to the ends of the earth for our children. We […]
By John Pring in Disability News Service. Charging disabled people for their care and support is driving many of them into debt and forcing them to cut their spending on food or heating, according to new research by a network of disabled people’s organisations and their allies. The study by the Independent Living Strategy Group […]
By Jessica Taylor-Bearman. My escapades with the change of drugs reached fever pitch three weeks ago, when I rang up the doctors with a blood pressure of 80/50….The dearest junior doctor had told me or more like made me promise that if my blood pressure went under 90/60, that I’d ring for an […]
By Sue Jones and Mel Storey in The Conversation. More than 50% of care home residents are being prescribed medicines that they do not need, or which do not properly address their health problems. Antipsychotics, for example, are often overused to treat the behavioural and psychological symptoms of dementia. But this problem is not easy to remedy. The […]
By Paul Lewis in SAGA Magazine. The fear of having to sell a home to pay for care is being exploited by commercial firms offering risky schemes to shelter homes from means-testing. Don’t fall for them. There are other, perfectly legitimate ways to preserve the value of a family home. When someone moves […]
Carers Rights Day Friday 30 November 2018 is Carers Rights Day; a national campaign to help carers know their rights and what help is available in their local community. This year we are pleased to be able to give carers the chance to meet and talk about their rights with York’s two MPs; […]
By Alex Taylor in BBC News. A year ago, I was told I would have to pay double to get into a nightclub in Ibiza. Why? I have cerebral palsy, a condition which affects mobility, and rely on a carer to help me on nights out – who also needed to pay the entry […]
From Probono Australia. People with disability, their families, carers and advocates deserve the certainty of a National Disability Insurance Scheme which is sustainable, writes Bruce Bonyhady. Australia urgently needs a lasting consensus on the funding of the NDIS which builds trust in the disability sector, confidence in the Australian community and sustainability of […]
May Bank holiday We will not be open on Monday 7 or Monday 28 May. We will not be checking our answer machine or emails on these days. If you need urgent help when we are closed please contact the Emergency Duty Team on 01609 780780. Job opportunity We are recruiting for a Sessional Carer […]
By Sarah Wells in My Stripey Life. I must admit this morning I’m having a bit of a meltdown. Schools again are causing me stress. Different schools, different reasons, different children. I’m in the midst of hunting for a secondary school for my son and I am trying desperately hard to make to […]
From Which ? Elderly Care. If a person has a disability that affects their ability to walk, they may be entitled to a Blue Badge disabled-parking permit. In this guide, you’ll find information on: 1. What is the Blue Badge scheme? 2. Eligibility 3. How to apply 4. Blue Badge renewal 5. Using your Blue Badge What is […]
By Richard Hartley-Parkinson in The Metro. A mother has spoken out about seeing her daughter waste away from a condition that some medical professionals say does not exist. Merryn Crofts died 10 days after her 21st birthday weighing less than six stone. Her mother Clare said that Merryn from Norden, Rochdale, had spent […]
By Damon Wilkinson in The Mirror. A young woman spent the last three years of her life bed-bound and in extreme pain as she wasted away from a disease some experts refuse to believe exists. Merryn Crofts weighed less than 6st when she died on May 23 last year, 10 days after she […]
Equality Act 2010 The Equality Act 2010 replaced all previous equality legislation, including the Disability Discrimination Act 2005 (DDA). It protects disabled people in all areas, including transport. Under the Act, transport providers have the duty to provide an accessible service and make ‘reasonable adjustments’ to offer the same standard of service to […]
By Stonebird. People with Severe and Very Severe ME are not safe within the current health system; this is not an exhaustive list by any means : 1. It is virtually impossible for the most severely affected to travel to a clinic or a hospital. 2. It is extremely difficult to find a knowledgeable […]
By Owen Bowcott in The Guardian. Wheelchair users are to be given enhanced rights for bus travel, the government has announced, after a landmark supreme court judgment. The transport minister, Nusrat Ghani, has promised to improve access to spaces on vehicles that are intended to be reserved for disabled passengers. The decision follows the legal victory last […]
By Emily Han in @Kitchen. For those with a permanent or temporary physical disability involving mobility impairment, cooking can present challenges as well as opportunities for creative problem solving. Not all disabilities or people are the same, but some of the common issues include limitations in standing, reaching, or using one side of […]
By Richard Morris in The Conversation. As winter continues, so does the usual soul searching about the state of the UK’s National Health Service (NHS). Images of ambulances backing up outside emergency departments and patients lying on trolleys in corridors haunt politicians and the public alike. Demand on the NHS, which is always […]
If you’re looking for advice about how you can get care and support for yourself or someone else, our guides can provide the answers. If you need more help or your situation is urgent, call our Freephone Helpline on 0800 319 6789 to arrange to speak to an adviser. As you get older, your care and support […]
By Chris Baynes in The Independent. The Government is to review 1.6 million disability benefit claims after the High Court ruled the system was “blatantly discriminatory” against people with mental health problems. Every personal independence payment (PIP) claimant is to be reassessed, with about 220,000 people in line to receive higher allowances, after ministers decided […]
From iNews. Headlines about this season’s flu outbreak make for alarming reading. Considered to be the worst flu season since 2011, as many as 120 people have died in the UK. There is also concern about Aussie flu – the H3N2 strain – taking grip of the UK as it has in Australia. It is one […]
From York CVS. In 2017 York’s Health and Wellbeing Board launched an ambitious Joint Health and Wellbeing Strategy, running till 2022. This effects all of us, living and working here. It has four key elements: mental health and wellbeing, starting and growing well, living and working well, ageing well. In 2018 we’ll be working […]
From British Healthcare Trades Association. Planning a holiday or travel as a disabled person or with a disabled family member can seem challenging. The question asked when it comes to offering travel options for people with disabilities or injuries is ‘how can travel change to positively benefit people’s lives and increase their independence?’ […]
From Phoenix Rising. Dr. Katrina Berne, a clinical psychologist and author who specializes in ME/CFS & fibromyalgia, has developed a comprehensive symptom checklist she advises her patients to complete and take to their doctors. This form should be updated every few months to document your symptoms and your progress. It’s especially helpful in […]
From BBC News. Ministers have backed down in a row over paying higher disability benefits to 164,000 people by saying they will not contest a High Court decision. Work and Pensions Secretary Esther McVey said she would not appeal December’s judgement over payments to people with mental health conditions. Ministers had sought to limit […]
By The Press Association, published by MailOnline. Some 60% of people claiming the main long-term sickness benefit believe the amount of money they get is not enough to live on, according to a major new survey. Labour called the findings from Employment and Support Allowance (ESA) claimants “a damning indictment of the Government’s […]
By David M Perry in Pacific Standard. In her new film Unrest, Jennifer Brea offers a groundbreaking look at the power of community where medicine falls short. When Jennifer Brea was 28 years old, she got sick and spiked a fever of 104.7 degrees. The fever went down, but soon she found herself […]
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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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31 May 2019 - Invest In ME Research Conferences, London.
This annual international, CPD accredited research conference provides a platform for the latest and most promising biomedical research into ME.
IIMEC14 will be the fourteenth conference and regularly attracts researchers, clinicians, doctors, nurses, occupational therapists, healthcare professionals and patient groups twenty countries from around the world.
The conference is a full day event from 09.00 to 17.30.
For up to date information, click on the link below:
Link to Invest In ME Research Conferences Information
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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 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.
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:
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…)