Charity

Action For ME Survey

Survey

        Hi everyone. I’ve received the following from Action for ME and pass it on should you wish to take part: Hello I am getting in touch to introduce myself as Action for M.E.’s Policy and Engagement Officer. A large part of my role is engaging with politicians to improve services and […]

VIDEO – Warning Over Illegal Behaviour As Flying Scotsman Visits York

Flying Scotsman

  From Minster FM. The iconic steam engine Flying Scotsman will be visiting North Yorkshire this weekend but those who are going to see it are urged to do so safely. This Saturday, the 29th June, the steam engine will travel up the Midland Main Line before heading to York. Enthusiasts are expected to be […]

ME Association May Summary of ME/CFS Published Research – 19 June 2019

Research

  By Charlotte Stephens, Research Correspondent, ME Association. The Index of Published ME/CFS Research has now been updated to take account of the research that has been published during the month of May 2019. It’s a little later than normal due to ME-related absence. The Index is a useful way to locate and then read all relevant research […]

What Is The NKS ?

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    NKS stands for ‘THE NATIONAL KEY SCHEME’! As the name suggests, located all around Britain, there are over 10,000 accessible toilets for disabled people, in public as well as commercial properties of all sorts, which are part of the scheme. The scheme also includes over 1000 Changing Places toilets, which have added specialist […]

Welcome To The June 2019 News Update For York Carers Centre

York Carers Centre

York Carers Centre news Thank You Volunteers It’s National Volunteers Week and we’d like to say a huge thank you to all of our committed volunteers, who generously offer their skills and time to help carers in York. From the board of trustees and office volunteers to those who help carers at groups across the […]

York Charity Receives £40,000 In Lottery Funding

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  From Minster FM News.   Many more people in York will be able to receive vital support and help, after a local charity received lottery funding. York Neighbours, which provides practical help and support to people aged over 65, has received £40,000 a year for the next three years allowing it to expand its […]

Telford Cyclist Takes On Epic Race To Help Teen With ME

Cycling

    From The Shropshire Star.   A cyclist will take on a challenging 100-mile race through woodlands in support of a bed bound 16-year-old with chronic fatigue. Kind-hearted Arry West, who is 44, will get on his bike for the epic Mountain Mayhem challenge on June 22 and 23 in aid of research into […]

York TV Coverage Of York Inset Scooter Club Ride Out

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  Below is a link to the coverage by York TV of The York Inset Scooter Club Ride Out on behalf of The York ME Community. I can’t say enough about how much this could change the lives of the many people in York with ME who are unaware of support in the area.  The […]

The York Inset Scooter Club Rides Out In Support Of The York ME Community – Photos

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  A brilliant morning watching the gathering of over 200 motorbikes and scooters of The York Inset Scooter Club set off from Clifford’s Tower in York on their Charity Ride Out on behalf of The York ME Community. They were seen off by the Mayor of York, the York Normandy Veterans, as well as members […]

Normandy Veterans Who Never Ran Out Of Steam

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      From The Yorkshire Post.   Not many survivors of the events in France 75 years ago remain, but two of them – three if you include the train they were on – enjoyed a day out in Yorkshire today. With so few members left, the Normandy Veterans’ Association has officially disbanded, but […]

The York Inset Scooter Club Ride Out In Support Of The York ME Community – Sunday 28 April 2019.

York Eye Scooter Club

  THE YORK INSET SCOOTER CLUB RIDE OUT IN SUPPORT OF THE YORK ME COMMUNITY – SUNDAY 28 APRIL 2019.   They will head off from The York Eye (Clifford’s Tower) set off by the Mayor of York and the York Normandy Veterans. They aim to depart at 10.30 am. Come and wave them off […]

User-Led Advice Centre Set To Close Its Doors After NHS Funding Blow

Disability

  By John Pring in Disability News Service.   A disabled people’s organisation is set to have to close the doors of its advice centre, which has provided vital support with benefit claims to thousands of disabled people, after nearly all its funding was suddenly withdrawn by a local NHS body. Possability People has been running […]

Trial By Error: Crowdfunding, Week 2; And More Sharpe And Chalder

David Tuller

    By David Tuller, DrPH As of this post, I have achieved 57% of my goal, with 542 donations and 15 days left to go. I think that’s pretty good! I’m optimistic about getting reasonably close to the amount I’m trying to raise. Folks at Berkeley certainly notice the success of my crowdfunding. It […]

Return On Investment II: David Tuller

David Tuller

By Jennie Spotila in Occupy M.E.   Last year, I fully endorsed Dr. David Tuller’s crowdfunding appeal in support of his investigative reporting on ME. This year, I am happy to endorse Tuller’s fundraising once again. The progress report that accompanies Dr. Tuller’s fundraising request (and also posted on Virology blog) details his research, writing and publications during the last year. […]

IIMEC14 – The Anne Örtegren Memorial Lecture 2019

Anne Ortegren

    From Invest in ME Research.   IIMEC14 is the fourteenth annual international ME conference that the charity has organised in London. For many of those years the charity often communicated with a patient/advocate in Sweden – someone we are proud to have called our friend.   Anne Örtegren passed away in January 2018. […]

Mike’s EU Marathons- Cyprus (17.03.19)

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  By Mike Harley. After 6 months since Sofia, I arrived in Cyprus for number 20 after 60 training runs and 400 miles of winter training to kick off year 5 and the first of six marathons in 2019.  Heading into the race I’d run my fastest ever Half Marathon (1 hr 40 in Gloucester) and raised […]

Extra Costs With A Disability

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  From Scope.   Life costs more for disabled people and their families. Spending more on essential goods and services like; heating, insurance, equipment and therapies. These extra costs mean disabled people have less money in their pocket than non-disabled people, or simply go without. Therefore, disabled people are likely to have a lower standard […]

Mike Harley’s Marathons For ME

Mike Harley

  Good luck to Mike Harley who is running 28 Marathons across Europe to raise Awareness and funds for Invest In ME Research.   On Sunday the 17th of March he will be running the Cyprus Marathon.   As always, a huge thanks from everyone in The York ME Community  Mike ! See the tab […]

What Is ME ?

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  From #MEAction.   Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million […]

Life Of Pippa, Spoonie Survival Kits…..And So Much More !

Pippa

  Hi Everyone. ‘My name is Pippa, and I’m a chronically ill writer and blogger at Life Of Pippa. I’m originally from Sheffield, but moved to York for university and have been here ever since! I’ve had ME/CFS since I was a teenager, but was only diagnosed in 2014, following a relapse at the age of […]

The York Inset Scooter Club Ride Out In Support Of The York ME Community

Scooter Rideout

Maybe one for your diary ? The York Inset Scooter Club will be having a Charity Ride Out to the coast, departing on 28 April from York Eye / Clifford’s Tower in York.   All proceeds will go to The York ME Community to help raise Awareness of ME in York. Why not come and […]

Amy Carlson – An Ally To The ME Community

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    By Adriane Tillman in #MEAction.   Allies are critical to the success of any movement and even more so in the case of people with myalgic encephalomyelitis (ME). So many people with ME are bedridden or housebound and unable to participate in some advocacy and activist actions. While we at #MEAction work hard to […]

Your Resource Center

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From the Open Medicine Foundation.   Navigating the challenging world of ME/CFS and similar chronic complex diseases can be overwhelming, isolating and confusing. We would like to help you identify resources for education, support, and assistance. (Each image and underlined item below links to the resource it describes. Click on the link to directly access […]

Berwick Kaler Foundation Aims To Bring Together Theatre And Community

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From The Yorkshire Times.   As Berwick Kaler’s 40-year reign as pantomime dame comes to an end, York Theatre Royal has launched a fund to celebrate and continue his legacy. “The Berwick Kaler Foundation will enable us to bring families, friends and communities together to share experiences and enjoy theatre in all its many forms,” […]

Amber Rudd Links Universal Credit To Rise In Food Bank Use

Universal Credit

  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 […]

A Date For Your Diary – York Inset Scooter Club Ride Out In Aid Of The York ME Community !

Scooter Club Ride Out

A Date For Your Diary   –  York Inset Scooter Club Ride Out In Aid Of The York ME Community ! So now we know the date of the event, will you come and join us to see them off ? All money raised will go to help raising awareness of ME in York through the […]

The York Inset Scooter Club Will Be Supporting The York ME Community In Their April Ride Out

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  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.   […]

Homeless: How AMMES Is Keeping People With ME In Their Homes

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By Erica Verrillo, who is President of the American ME and CFS Society (AMMES) in #MEAction. Years ago, Dr. Bell made the observation that many people currently living in cars most likely had chronic fatigue syndrome (CFS). (The acronym myalgic encephalomyelitis (ME/CFS) was not used at that time.) Under any circumstances, the threat of homelessness […]

Mike’s EU Marathon Challenge

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  By Mike Harley.   Running a marathon in each EU member country (28 currently) for Invest In ME (www.investinme.org) for biomedical research to treat and cure ME. Next up: #20 Paphos (Cyprus), 17/03/19   To read the rest of this story, click on the link below:   Link to Mike Harley’s story

New Research: Gene Variations In ME/CFS

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  By Rachel Black in Bateman Horne Center. In our December 2018 education meeting, we were pleased to hear from Dr. Alan Light, a Professor of Anesthesiology, Neurobiology, and Anatomy at the University of Utah. He has published more than 120 peer-reviewed articles, and has spent the last 10 years of his career focusing on the symptoms […]

Music4ME Album

Music4ME - Copy

  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 […]

International ME Awareness Day – 12th of May

ME Awareness Day

  From ME Support.   The clock is now counting down to International May 12th Awareness Day 2019. This year, 2019, marks the 27th anniversary of International May 12th Awareness Day. The idea originated with Thomas Michael Hennessy, Jr., the founder of Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases (no longer active). Tom Hennessy was based in […]

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