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 […]
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 […]
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 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 […]
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 […]
A Blue Badge & Invisible ME Gone from being life and soul Health gone down a huge black hole Rarely getting out too far Too much pain is the bar A blue badge now has rescued me When strength allows, it sets me free It gets me to a needed door Which […]
From Forces Network. Military veterans are to be given ID card to recognise that they have served. The cards will initially be given to all personnel leaving the military, while veterans who have already made the transition to civilian life will be able to apply for a service leavers ID card from next […]
By Rachel Wearmouth in The Huffington Post . ‘You feel that whatever you say may be taken out of context,’ says former Paralympian. Disabled people avoid exercise as they fear being stripped of much-relied on benefits for appearing “too independent”, campaigners say. New research, published by Activity Alliance, says that almost half (47%) […]
By David Tuller, DrPH. The UK’s National Institute for Health and Care Excellence (NICE), which develops clinical guidelines for a range of medical conditions, is currently selecting a committee to develop a new guidance for the illness it refers to as myalgic encephaloymyelitis/chronic fatigue syndrome (ME/CFS). The new guidance will replace one written in 2007, when […]
By Jack Peat in The London Economic. Drastic cuts to social support and welfare risk damaging the very fabric of British society, a UN report has today revealed. Concluding his 12-day visit to the country the UN Special Rapporteur on extreme poverty and human rights, Philip Alston, said the UK Government’s policies are […]
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 Brian Hughes in Not The Science Bit. Lines are drawn A quarter of a million Britons have been diagnosed with myalgic encephalomyelitis (ME), the condition also known as chronic fatigue syndrome (CFS). ME/CFS is a severe debilitating illness that renders patients either temporarily or perennially immobile. Sufferers will have often led very active lives […]
By Emily Hennings in This Is Local London. Claudette Lawrence, 49, is an activist and campaigner who also suffers with myalgic encephalomyelitis (ME), which can cause extreme mental and physical exhaustion. She has set up the petition because she has recently come into contact with a lot of people who are having problems when it […]
This is the text of an email I’ve sent to York MPs to gain support for a Parliamentary Debate on ME. We are entering an extremely crucial period where NICE are reviewing their guidelines to potentially remove the harmful Graded Exercise Therapy (GET) as a recommended treatment for this illness. They are however loading their […]
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 John Pring in Disability News Service. Four equality and human rights watchdogs have heavily criticised the government for its failure to address the serious concerns raised in a “damning” UN report on the rights of disabled people across the UK. A year on from the report by the UN’s committee on the rights […]
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 […]
From The Guardian. Ann Moore says the ‘health professionals’ often have little or no expertise in the medical condition or disability being assessed. Plus letters from Rev Paul Nicolson of Taxpayers Against Poverty, and from disabled war pensioner Mo Stewart. I fully empathise and sympathise with the article about Andrew McDonald (Top former civil servant lambasts ‘hostile’ disability […]
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 […]
In BBC News. Changes to the way assessments for disability support will be carried out under Scotland’s new social security agency have been announced at Holyrood. The new body is to take responsibility for a range of welfare benefits, including disability support. Ministers have set out plans for how assessments will be run […]
BY MEADVOCACY ADVISORY-COMMITTEE. The US federally chartered Chronic Fatigue Syndrome Advisory Committee (CFSAC) – formerly known as the Chronic Fatigue Syndrome Coordinating Committee – was established by the Secretary of Health and Human Services on September 5, 2002. Its purpose included advising and providing recommendations to the Secretary of Health and Human Services, through the […]
By Susan Cole in #MEAcion. ME history was made this week in the historic capital of Scotland when delegates at the Scottish Liberal Democrats autumn conference voted to support conference motion SC5: Investing in ME – Recognition, Research, and Education. So it’s official, the motion, drawn up in consultation with #MEAction Scotland, is […]
By Lesley Scott in Third Force News. What happens to patients’ rights when there is no accountability in the system? Myalgic encephalomyelitis (ME) is categorised by the World Health Organisation under diseases of the nervous system. The Scottish Government supports this categorisation and it underpins the current Scottish good practice statement on ME. […]
From The Skye Times. Skye’s Councillors will spend a day entirely in wheelchairs for Wheelchair Awareness Day. Organised by the Skye and Lochalsh Access Panel, the event will take place in Broadford and Portree on Monday 27 August. The Councillors have given the day their full support and will spend the day trying a […]
By Frances Ryan in The Guardian. One of my abiding childhood memories was being given my first wheelchair. Until I was six, I had to resort to a large buggy, a mass of translucent plastic frames and ugly grey wheels. It was through the charity Whizz-Kidz that I finally got my first wheelchair, a streamlined […]
By John Pring in Disability News Service. The minister for disabled people is refusing to meet a coalition of disabled people’s organisations, in an apparent breach of the UN disability convention. The coalition wrote to Sarah Newton yesterday (Wednesday) to express its “deep disappointment and concern” about her refusal to meet them to discuss […]
By Steve Topple in The Canary. A response from the General Medical Council (GMC) to hundreds of complaints has effectively abandoned 250,000 disabled people. It also demonstrates the GMC’s contempt for the patients it’s supposed to protect. Moreover, in dismissing patient’s concerns, it’s whitewashed what one MP believes could be the “biggest medical scandal of the 21st century”. […]
By John Pring in Disability News Service. New figures show that Department for Work and Pensions (DWP) civil servants are questioning only a tiny proportion of the benefit assessment reports written by discredited government contractors Atos and Capita. Campaigners have been trying for months to secure evidence that would explain why such a […]
By John Pring in Disability News Service. Ministers are refusing to commission work that would cost just £125 and would show how many disabled people are in full-time paid employment, and how that number has changed under successive Tory-led governments. Ministers, including the current work and pensions secretary Esther McVey, have repeatedly boasted of […]
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 […]
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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…)