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 […]
By Victoria Reay in The Conversation. The NHS is going digital. Slowly. After spending billions of pounds on IT projects of variable success, the aim is now for the NHS to be largely paperless by 2023. There is no doubt that the NHS needs to digitise its paper records, and it needs to link up the […]
By Catriona Webster in The Sunday Post. BELLE and Sebastian frontman Stuart Murdoch will call on people to “make a noise” to help improve the lives of at least 20,000 Scots living with myalgic encephalomyelitis (ME). The lead singer of the indie band, who has lived with the condition most of his adult life, […]
The City of York is supporting ME awareness week, as a result of a recent Liberal Democrat motion to kick-start an awareness campaign on the issue. Over this week, York’s historic city walls and Clifford’s Tower will be lit up every night until the 13thMay to show support for The York ME Community, who […]
By Cort Johnson in Health Rising. A Freedom of Information Act (FOIA) reveals that during the three grant review panels from July 2017 to April 2018, chronic fatigue syndrome (ME/CFS) researchers applied for a total of 12 grants. It was the lowest number of grant applications to the panel dating back at least […]
By Mike Harley. I spoke to Rebecca Hansen from the Danish ME Association ME Foreningen and severe ME patient Kamilla Thomsen. Here’s what they told me about living with ME in Denmark. For Danish translations click here Rebecca Hansen Can you give us an overview of what life is like for ME patients in […]
By Kathryn Adamson in The Conversation. The largest wildfire ever recorded in Greenland was recently spotted close to the west coast town of Sisimiut, not far from Disko Island where I research retreating glaciers. The fire has captured public and scientific interest not just because its size and location came as a surprise, but also because it is […]
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 Ruth Hayhurst in Drill Or Drop. Drone pictures taken today of Third Energy’s Kirby Misperton fracking site in North Yorkshire show that the site has now been cleared. Third Energy told local people last week that is was releasing the frack spread after the contractor wanted to use it in Europe. Equipment has gradually […]
From YorkMix. The big issues of the day are to be debated live on TV in York this weekend – and you can be a part of it. Discussion show The Big Questions will come live from Manor CE Academy between 10am-11am on Sunday (April 8). Hosted by Nicky Campbell, the programme debates moral, ethical and religious issues. A […]
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 […]
By Joe Penny from the York Liberal Democrats website. In a recent letter from Tobias Ellwood MP, the Ministry of Defence (MOD) have openly committed to working with the Council to explore potential opportunities for retaining civilian posts in York, despite the closures of Queen Elizabeth and Imphal Baracks. Tobias Ellwood MP, the […]
By Steve Topple in The Canary. The publication of a study into what an MP called one of the “biggest medical scandals of the 21st century” has sparked a war of words between areas of the medical and science communities. Caught in the crossfire are between 17 and 24 million disabled people worldwide, on whom critics of […]
On the evening of Thursday 22 March, Cllr Runciman proposed the Liberal Democrat motion to raise ME Awareness in York. This was passed through council unanimously ! I would like to thank all in council who listened to my support of the motion and Cllr Runciman and her staff for getting this through.
By Kate Buck in METRO. A wheelchair-bound nine-year-old’s journey to school takes four times longer than it should because drivers are selfishly parking their car on the pavements. It should take 10 minutes for Josh Carter to get to school using his electric wheelchair. But when cars are parked on the curb, […]
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 Anne Marie Rafferty and Jonathan Grant in The Conversation. Faced with an ageing population and funding pressures, fresh thinking is needed to brace the NHS for what lies ahead. Perhaps the answer to some of the impending problems in health policy can be solved with a relatively old idea adapted from the world of monetary […]
By David Tuller, DrPH. So I arrived in Melbourne on Wednesday afternoon. I’ll be in Australia for several weeks for meetings, interviews and general information-gathering. I’ll post occasionally, but some of the information might be for future blogs and stories. I’ve conducted a Q-and-A about the general situation in the country with Penelope […]
By David Tuller, DrPH. And now some potentially good news from the Netherlands. Two years ago, the Dutch parliament asked the Health Council—an independent scientific advisory body—to review the state of evidence related to the illness generally called chronic fatigue syndrome in the Netherlands. That review was to include the evidence for rehabilitative […]
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 […]
You will be aware that I had a meeting with City of York Council on the subject of Raising ME Awareness. I have received notification that the Lib Dem Group will be proposing a motion at the next full council to raise awareness of ME in York. There will also be a Press Release by […]
![overseas-medical[1]](http://www.york-me-community.org/wp-content/uploads/2015/08/overseas-medical1-150x150.jpg)
By Adam Marcus and Ivan Oransky in STAT News. It’s a textbook that has graced the shelves of untold thousands of medical students going back decades. Harrison’s Principles of Internal Medicine, now in its 20th edition, is a must-read for medical students and young internists. It has been called “the most recognized book in all of medicine.” It’s also […]
By Lily Williams in ASBMB Today. Lizzie Mooney is 12 years old. She is tall for her age with long blonde hair. She likes to wear Chicago Bears pajama bottoms and a hoodie. She’s funny, making up games and teasing her siblings. Lizzie excels in reading and math. She spends time crafting and watches science […]
By David Tuller, DrPH. Two pieces of news dominated yesterday’s announcement from the CFS/ME Research Collaborative: First, the group is narrowing its scope of activities to focus on promoting “the discovery of the biological mechanisms that underpin CFS/ME.”Second, Professor Esther Crawley is not only stepping down as deputy chair of the executive board but leaving […]
By Paul Lewis in SAGA Magazine. Every April, state pensions and benefits for older people are increased to help them pay for the rising cost of food, energy and other essentials. But this year the amount paid to around two million of the poorest pensioners will not keep up with rising prices, as […]
From Your Daily Ideas. License to treat pain with medicinal cannabis given the go ahead A license to treat chronic pain with medicinal cannabis has been granted here for the first time, it has emerged. A 3-month agreement was given the green light by the Department of Health to use Tetrahydrocannabinol (THC) people […]
By Kate Harveston / AlterNet. Remember how appalled we felt as a society when we discovered that, for so long, we had been mistakenly taking Big Tobacco’s word that cigarettes are harmless? Rinse and repeat with lobbyists for Big Alcohol fear-mongering about legal weed. And again and again with a panoply of consumer-level commodities and goods. Nowadays we have […]
30 - 31st May - The Invest in ME Research Biomedical Research into ME Colloquium 8 (BRMEC8) will take place in London over two days. For more information, click on the link below:
Fri 1 Jun - Invest in ME Research International ME Conference, London. Our local York MP's have been sent details. For more information, click on the link below:
Mon 4 June at 11 am - Coffee Club at Bar Convent, 17 Blossom St, York.
Wed 20 June at 2 pm - Coffee Club, Novotel York.
Weekly - Every Wed, 8 pm - 9 pm on Twitter, ME Awareness Hour using the #MEAwarenesshour hashtag.
Carol Monaghan SNP spoke in Parliament about the PACE Trial and how it effects those with ME. 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:
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:
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:
This is a call out to all York Businesses, Clubs and Venues to sign up for the new Fantasy Football season and support your local ME Community.
To join in for the 2018/19 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.
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.
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.
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:
To make sure you know the best place to go in order to get the most suitable treatment this winter, 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.
This annual international CPD accredited research conference at One Great George Street, London provides a platform for the latest and most promising biomedical research into ME, and will be attended by researchers, clinicians, doctors, nurses, occupational therapists, healthcare professionals and patient groups from twenty countries around the world and is open to all.
To read more about this conference, 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…)