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 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 […]
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 Jo Moss in A Journey Through The Fog. We all know the anxiety inducing feeling of the dreaded brown envelope falling on your door mat. Being assessed, or reassessed for health and disability benefits, is both exhausting and scary. We are often made to feel we are faking it or exaggerating our symptoms. […]
By Katie Campbell in UNITE. Leaked documents seen by the BBC have shown that the government will once again delay the rollout of Universal Credit, with Esther McVey saying that a “small amount of people – maybe 10,000” will be moved onto the system in 2019. Despite the government’s plans to have Universal Credit fully up-and-running […]
by Katie Campbell in UNITE. Esther McVey has told the BBC that one million disabled people will get “significantly more on Universal Credit,” despite previous evidence showing that disabled people face losing out on up to £4,000 every year under the new system. Speaking to the BBC yesterday, McVey admitted that the Tories have made some “tough […]
By John Pring in Disability News Service. A charity has refused to criticise the Department for Work and Pensions (DWP) over four deaths linked to universal credit, hours after a minister announced it would receive tens of millions of pounds to support claimants on the new benefit system. Work and pensions secretary Esther McVey […]
By Paul Lewis in SAGA Magazine. As we age, minor niggles with our health can become a serious – and costly – problem. However, there are state benefits to help. The rules are complex, but don’t be put off. You have paid taxes all your life for others and now is the time […]
From Age UK. What is the benefits calculator? Our personalised benefits calculator can tell you if you’re potentially entitled to claim extra money, based on the information you provide – such as whether you’re single/in a couple, where you live or if you care for anyone. It’s easy to use, quick, free and all […]
By Ros Wynne Jones in the Mirror. The long waits for help under UC continue to drive impoverished families below the breadline. In May I wrote about the distressing case of two men – one dying and one disabled – fighting Esther McVey in the high court over cuts to their support due to Universal […]
By Patrick Butler in The Guardian. Universal credit is so riddled with design flaws and process faults that it is practically guaranteed to generate mistakes and delays that would push vulnerable benefit claimants into hardship, according to whistle-blowers. Service centre workers have told the Guardian that glitches and errors in the “cobbled-together” system have […]
From BBC News. A magistrate has been told to step down by judicial chiefs after “misusing” a disability parking badge. Margot Conyers, who heard cases in North and West Yorkshire, was investigated after a complaint to the Judicial Conduct Investigations Office (JCIO). The JCIO said Miss Conyers’ actions were found to be “incompatible […]
From Disabled Go News. The government’s decision to stop regular benefit reassessments for some people with “the most severe, lifelong conditions” shows that replacing disability living allowance (DLA) with personal independence payment (PIP) was a waste of time and money, it has been claimed. Sarah Newton, the minister for disabled people, confirmed this […]
By John Pring in Disability News Service. The minister for disabled people has been caught misleading MPs – again – as she tried to defend her government’s repeated breaches of the UN disability convention. It was the second time in five months that Sarah Newton (pictured) has misled MPs in a House of […]
From My Disability Matters. The Department for Work and Pensions (DWP) should reconsider its decision to offer only a partial backpayment of the money owed to 70,000 disabled people who for years were not receiving the correct level of out-of-work benefits, MPs have heard. One Conservative member of the public accounts committee, Anne […]
By Steve Topple in The Canary. A panel of judges has backed the Department for Work and Pensions (DWP) into a corner. So much so that it’s being forced to review the benefit claims of countless disabled people. Another defeat for the DWP On Wednesday 30 May, the legal firm Garden Court North […]
By John Pring in Disability News Service. Imposing benefit sanctions on disabled people is counter-productive, ineffective and “probably too dangerous”, a trio of experts have told MPs. The Commons work and pensions committee also heard that the failure of the Department for Work and Pensions (DWP) to research the impact of its sanctions […]
From Independent Age. These are the main changes you need to know about for the start of the new financial year (1 April) and tax year (6 April), including changes to State Pension and benefit rates. The figures listed below are the weekly amounts you’ll get unless stated otherwise. To read the rest […]
From Disabled Go News. Almost a third of assessments for the PIP disability benefit are not fully up to scratch, figures reveal. The data shows the shocking full story behind the official figure that 95% of reports are “acceptable”. Atos and Capita have a target for 3% or fewer of their reports to […]
By Patrick Butler in The Guardian. Tens of thousands of severely disabled and ill claimants are set to receive backdated payments of up to £20,000 after being wrongly underpaid for years by social security officials, the government spending watchdog has revealed. An estimated 70,000 claimants were underpaid about £340 m between 2011 and 2014 after […]
From Disabled Go News. The victory rate for people appealing for disability benefit has reached its highest ever. Personal Independence Payment (PIP) assessments have been branded a “total failure” as 69% of people appealing them at a tribunal now win their case. That is the highest percentage success rate ever recorded since […]
By Samuel Osborne in The Independent. Private firms carrying out controversial disability assessments have received a £40m increase in funding despite widespread concerns with the system, it can be revealed. A freedom of information request by The Independent found the Department for Work and Pensions (DWP) paid Independent Assessment Services (formerly known as Atos) and Capita nearly […]
This article titled “Universal credit system faces landmark legal challenge” was written by Jamie Doward, for The Observer on Sunday 4th February 2018 00.05 UTC A terminally ill man has won the right to launch a landmark legal challenge to the government over its introduction of universal credit after the controversial new […]
Personal Independence Payment claimants! Send details of your experience for Parliamentary debate
From Independent Age. How to boost your income and save money The Independent Age website has a lot of information about extra money you can claim and ways you can cut your bills. For help tailored specifically to you, call our free Helpline on 0800 319 6789 to arrange to speak to an adviser. A […]
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 Tauhid Chappell, and Kayla Epstein in The Washington Post. Last year, The Washington Post explored how rural American communities have been reshaped by the significant growth in disability programs over the past two decades. As the series of articles progressed, we heard from readers nationwide about their experiences with disability benefits. A common theme […]
By Aditya Chakrabortty in The Guardian. When Moira gets scared, she cuts herself. “It’s my way of taking control.” Right now she’s very scared. In a few days she faces a tribunal that will judge whether she is entitled to her disability benefit. She has been through forms and examinations and the officials who tell her […]
By John Pring in Disability News Service. A nurse carrying out a disability benefit assessment fired questions at a disabled man’s wife while her husband was in the middle of a severe and prolonged series of epileptic seizures just a few feet away. Daniel Marshall, from Dorset, had only been able to answer […]
By Peter Bradshaw in The Guardian. Do you shake hands? I do – with people I’m meeting for the first time, and often meeting up with people I already know really well. But the classic handshake is now not the single accepted greeting, and even with strangers you must awkwardly negotiate the possibility […]
By May Bulman in The Independent. Successful appeals brought against DWP by disabled people denied PIP benefits are higher than ever, with 68 per cent of appeal hearings found in favour of the claimant. The Government’s new benefit system is wrongly denying disabled people financial support at a higher rate than ever, new figures show. Decisions by the Department of Work […]
Author: Liam.Evans@turn2us.org.uk The inquiry into Personal Independence Payment (PIP) and Employment and Support Allowance (ESA) has revealed testimonies of despair. A Work and Pensions Committee inquiry into disability benefits has heard from more than 3,000 people despondent with the system. The inquiry into PIP and ESA has revealed countless experiences of severely disabled […]
By Adam Jacques in The Guardian. My wife tried to kill herself in March. She took an overdose – while I was watching TV in the next room. Cue, in short succession: 30 minutes of heart-stopping panic, a nerve-jangling ambulance trip to A&E, an admission to a secure mental health unit, and […]
By an anonymous author in The Guardian. I’m a call handler for the DWP, where empathy isn’t a trait that’s valued very much. But I’ve been on benefits and I know how difficult it can be looking for work while trying to survive on a minimal amount of money. I wish I was […]
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Sun 28 Apr 2019 - The York Inset Scooter Club will be setting off on their annual Mods and Rockers Charity Ride Out from Clifford's Tower in York to the coast in aid of The York ME Community. Departure time is 10.30 am. Why not come a long to wave them off with us ?
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Mon 6 May 2019 at 11 am - The York ME Community Coffee Club at Bar Convent, 17 Blossom Street, York.
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6 - 12 May 2019 #Missing Millions Events around the country.
For Birmingham, on Friday 10 May, 12 noon to 4pm, at St Philip's Cathedral.
For Leeds, on 11 May, full details can be found by clicking on the link below:
Link to Missing Millions Event in Leeds
For Bristol, 11 May, contact : BristolMissingMillions@gmail.com.
For Liverpool 11 May, contact ask@alishawitham.com
For Norwich 11 May, 11.00 am by McDonald's and NEXT.
For Durham, 11 May, 11.30 am to 3 pm in Durham City Market Place. Info at: www.menortheast.org
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12 May 2019 (but may be for the week around that date)
Clifford's Tower and city walls in York will be lit in blue for ME Awareness.
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To get involved in Nottingham on 12 May, contact: meshnottingham@gmail.com.
For Southampton on 12 May, MillionsMissingSouthampton@gmail.com.
For Glasgow 12 May, starts at 2 pm at George Square.
For London 12 May, starts at 12.30 pm, ends 2.30 pm, St John's, Waterloo Road, SE1 8TY.
For Hebden Bridge on 12 May, starts at 12.00 pm.
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Wed 15 May 2019 - at 2 pm - The York ME Community Coffee Club at Novotel York.
Sunday 19 May 2019 - #22 - Riga (Latvia)
Mike Harley's EU Marathons for Invest in ME Research
Link to Mike's Website For More Information
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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.
STOP PRESS: FULL DEBATE TO BE HELD IN PARLIAMENT ON THURSDAY 24TH JANUARY 2019
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:
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 have agreed to support The York ME Community.
They will head off from The York Eye (Clifford’s Tower) on Sun 28 Apr on a run out to the coast, and be set off by the Mayor of York and the York Normandy Veterans. They aim to depart at 10.30 am. Why not come along and wave them off with us ?
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.
Last season was a great success with 15 teams involved, and this season is going brilliantly with the aim of spreading ME Awareness. As a bonus, we have also raised £725.00 for Invest in ME Research.
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 join in for next season and 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, 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:
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…)
