By Yvonne Roberts in The Guardian. Two years ago the United Nations released the findings of a secret inquiry into state-level violations of the human rights of disabled people. Its conclusion was that a “human catastrophe” was under way. In every sphere, including employment, housing, education and social security, disabled people are hugely disadvantaged. Shamefully, […]
MY ME PUZZLE From our early days as we grow We learn and add to what we know Each piece of knowledge builds a picture To help us make our living richer We find the people who fit right in Our family, friends, our kith, our kin We find beliefs, our way, our […]
By Samantha Renke in The Metro. Living with a disability in the UK today means living in a state of perpetual fear, feeling unheard, patronised and at times like a burden – and it can take a huge toll on your mental health. I was born with a genetic condition called Osteogenesis Impefecta […]
By John Pring in Disability News Service. Disabled people’s organisations have reacted with suspicion and some hostility to the outgoing prime minister’s attempt to shore up her “legacy” with a series of disability-related announcements. Although some of the measures announced by Theresa May (pictured) were welcomed, many user-led organisations questioned why she had left […]
By Benjamin Kentish in The Independent. Ministers have been condemned after admitting that they have not carried out any assessment of the impact that a no-deal Brexit would have on the lives of people with disabilities. The government was accused of having “ignored” people with a disability after admitting that “no formal assessment” had been conducted, despite fears over a […]
By Dan Bloom in The Mirror. The Disability Benefits Consortium claims the adverts are “deliberately misleading” and contain “obvious exaggerations”. Charities have reported the government to the advertising watchdog over “deliberately misleading” promotions for Universal Credit. The Disability Benefits Consortium, a coalition of more than 80 disability charities, lodged a formal complaint to the Advertising […]
By Dan Bloom in The Mirror. EXCLUSIVE: Atos and Maximus had their PIP and ESA contracts extended for the second time despite accusations they’re running a “failing” welfare system. Now the eye-watering cost to taxpayers can be revealed. Tory ministers are quietly handing private firms an extra £630 million to test sick and […]
From IOM Today. News from The Isle of Man. Former government minister Phil Gawne has issued a plea to the Health Minister to try harder to give people with ME the service they need. Mr Gawne was speaking after Health Minister David Ashford told the House of Keys last week that money allocated […]
By Aditya Chakrabortty in The Guardian. How to sell the unsellable? How to pretend utter chaos is a plan coming together? How to persuade the public, who just refuse to buy it, to at least keep on paying for it? I believe I have found the answer. It comes in the form of an internal […]
by Sasha Nimmo The Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) patient and research communities are delighted the Australian parliament officially recognise the urgent need for biomedical research in the field. Senator Anne Urquhart, a Tasmanian Labor senator, (on behalf of her colleague Senator Helen Polley) and Senator Stirling Griff, a Centre […]
By Frances Ryan in The Guardian. In times of deep inequality and shrinking services, politics is often framed like a David and Goliath battle. You see it in the mothers who this week challenged the London developers trying to stop their “social housing kids” playing in segregated play areas. Or the teachers and parents in Cambridge marching against […]
By Jennie Spotila in Occupy M.E. There is no question that NIH’s funding of ME/CFS research has been minuscule relative to the size of the public health crisis. Review of ME/CFS grant applications at NIH has drawn scrutiny from the public as one contributing factor. The public perception is that the grant review panelists […]
From Invest In ME Research. Following excellent work by European ME Alliance-Denmark member Dansk ME Foreningen, and work and input by those such as European ME Clinicians Council member Dr Jesper Mehlsen, there is now unified support in the Danish parliament for separating ME G93.3 from Functional Disorders and acknowledgment […]
From #MEAction. This past Tuesday, March 12, Danish Health MPs unanimously agreed on a declaration that will recognise myalgic encephalomyelitis (ME) as a distinct disease, remove it from the “functional somatic syndromes” category, and promote the World Health Organization (WHO) diagnostic codes for ME. Parliament will vote on the declaration this Thursday, […]
By Tom Burridge, Transport correspondent, BBC News. Train operator Northern’s six-carriage long services in and out of Leeds station have been delayed by two years, BBC News has learned. The longer trains were to be introduced at the end of this year but will now not enter service until late 2021. The delay is […]
By John Pring in Disability News Service. The minister for disabled people has been forced to apologise to MPs after Disability News Service (DNS) caught her misleading MPs about support for disabled people for the fourth time in less than a year. The misleading comments by Sarah Newton about disability poverty came in […]
By Lisa Meakin in the Manchester Evening News. Not a single patient has used the Altrincham Health and Wellbeing Centre – now another £1.5m could be spent turning part of it into office space. Another £1.5m could be spent turning part of a brand new health centre into OFFICE space because the NHS services it […]
By John Pring in Disability News Service. Activists have told a UN committee how the UK government is failing to address the significant barriers and human rights violations faced by disabled women in accessing social security, justice, jobs and health services. Eleanor Lisney and Rachel O’Brien, from the disabled women’s collective Sisters of Frida, were […]
Q Asked by Mrs Sharon Hodgson (Washington and Sunderland West) on 14 Feb 2019. Department for Business, Energy and Industrial Strategy Chronic Fatigue Syndrome: Research 221619 To ask the Secretary of State for Business, Energy and Industrial Strategy, how many grant applications have been made to the Medical Research Council for ME/CFS related research since 2010; how […]
Question by Frank Field MP. Chronic Fatigue Syndrome: Medical Treatments. 218214 To ask the Secretary of State for Health and Social Care, what steps his Department is taking in response to the resolution of the House of 24 January 2019 on appropriate ME treatment. Answer by Steve Brine: The Government is investing over £1.7 […]
From BBC News. Amber Rudd says the increased use of food banks is partly down to problems in rolling out universal credit. The work and pensions secretary said she was “absolutely clear there were challenges with the initial roll-out” of the benefit and that the difficulty in accessing money was “one of the […]
by Jennie Spotila in Occupy M.E. There is no question that NIH’s funding of ME/CFS research has been minuscule relative to the size of the public health crisis. Review of ME/CFS grant applications at NIH has drawn scrutiny from the public as one contributing factor. The public perception is that the grant review panelists have not been […]
By John Pring in Disability News Service. The Department for Work and Pensions (DWP) is refusing to say which police forces have passed it video footage and other information about claimants of disability benefits who have taken part in anti-fracking and anti-austerity protests. DWP’s attempt to hide its links with police forces has caused […]
By David Tuller, DrPH During last Thursday’s historic debate on ME in the House of Commons, it was refreshing to watch one MP after another stand up and slam the PACE trial and the non-evidence-based treatment paradigm promoted for decades by the GET/CBT ideological brigades. It was also interesting to note that no one defended this egregious […]
By Nicola Slawson in Huffington Post. Universal Credit claimants are left “swimming against a tide of unmanageable repayments” when they are forced to take loans ahead of their first payments, it has been claimed. The comments come as the government has responded to a damning report by the Work and Pensions select committee, which […]
Written by Kitty S Jones in Politics and Insights. I co-run an online advice and support group for people going through Personal Independence Payment (PIP) and Employment and Support Allowance (ESA) claims, assessments, mandatory reviews and appeals. Recently there has been a spike in people being reassessed for their awards of both kinds of […]
By Stuart Murdoch in #MEAction. Stuart Murdoch is the lead singer of Belle and Sebastian. He has had ME for 28 years and he has kindly shared with us this open letter to the UK government ahead of the ME debate on Thursday, 24th January. Dear UK Government, I am one of the […]
By Steve Topple in The Canary. There will soon be a watershed moment for millions of chronically ill disabled people. Because what one MP described as a “medical scandal” will now face a full parliamentary debate. To read the rest of this story, click on the link below: Link to ME story
Carol Monaghan, MP for Glasgow NW. SNP Spokesperson for Education, Armed Forces & Veterans, is delighted that @CommonsBBCom have granted a Backbench debate on #ME. This debate will take place on Thursday 24th January. Thanks to everyone who has campaigned to achieve this.
By JENNIFER SPOTILA in statnews.com. When I first developed myalgic encephalomyelitis in 1994, I had no idea that I would be just as sick 25 years later, or that there would still be limited scientific understanding of the disease and no effective treatments. Nor did I imagine that my career as a lawyer was over, and […]
By John Pring in Disability News Service. The roll out of the government’s much-criticised universal credit benefit system has not been delayed and will proceed as planned, the Department for Work and Pensions (DWP) has confirmed. Reports at the weekend suggested that new work and pensions secretary Amber Rudd had decided on a […]
By Simon Rushton in iNews. Officials behind Universal Credit are being criticised for failing to track data on people who want to apply offline. Universal Credit is the government’s first digital-only service, and claimants must apply online for the Department of Work and Pensions benefit. But there worries that the system is excluding […]
One of my favourite Christmas presents this year, a sticker for the car from my wife and daughter…… There is a need for a Government backed, nationwide TV and Radio educational campaign to raise awareness of Invisible Illnesses and Disabilities.
By David Tuller, DrPH in Trial By Error. In an eagerly awaited draft report, an Australian advisory committee on ME/CFS has called for the development of up-to-date domestic clinical guidelines and an increase in biomedical research into the pathophysiology of the illness. The draft report, which could have a major impact on health policy […]
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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.
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The third Wednesday of each month - at 2 pm - The York ME Community Coffee Club at The Novotel, York.
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Weekly - Every Wed, 8 pm - 9 pm on Twitter, ME Awareness Hour using the #MEAwarenesshour hashtag.
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…)
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: