Charity

THE YORK ME COMMUNITY – YORK INTER COMPANY FANTASY FOOTBALL LEAGUE FOR THE YORK ME TGA SHIELD – UPDATE !

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  The York ME Community runs an Inter-Company Fantasy Football League sponsored by TGA Mobility.  This is to help raise awareness of the illness that affects around 250,000 people in the UK, and 800 in the York area alone.  Of those around York, 200 are likely to be severe, meaning house or bed bound. On […]

Motability Charity Boss To Go After Extra Bonus Revealed

Motability Logo

    From BBC News.   The boss of Motability Operations is to step down by 2020 following criticism over his pay and a scathing review from the government’s spending watchdog. The report from the National Audit Office revealed Mike Betts was in line for an extra £1.86m bonus on top of already “generous” pay. The […]

This Is Personal: BHC’s Patient-First Perspective

Bateman Horne Center

  By Rachel Black in The Batema Horne Center.   Bateman Horne Center is guided by a board of directors that is intimately connected to ME/CFS and FM. Many have sons, daughters or are themselves managing an illness that has taken much of their life away. The Horne in Bateman Horne Most of you know that our […]

Playing Nice With NICE

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  From Dizzy Girl Writes.   In view of my last blog post, I have decided to email NICE to talk about my experiences of having ME under the current guidelines and to raise my concerns about their panel. The latest tweets I’ve seen suggest that their panel for the review of guidelines for treating […]

A Continuing Saga Of Ineptitude

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From Invest In ME Research.   Comment After failing ME patients for so many years with their guidelines, and despite being taken to a judicial review (by patients), and despite the NICE guidelines director seeming to admit that the current guidelines were unfit for purpose, NICE were able to begin afresh and really concentrate on […]

Why We Wear Poppies On Remembrance Day

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From Forces.net. The poppy remains to this day an “enduring symbol of remembrance of the First World War”. Often associated with Armistice Day on 11 November, the poppy’s origin as a symbol of remembrance remains in the landscapes of the First World War. Helen Mavin, curator at the Imperial War Museum, explained the reasons behind the […]

Mike’s EU Marathons For Invest In ME Research – Bulgaria Report

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By Mike Harley.   Just 5 weeks after Tallinn, I travelled to Sofia in Bulgaria to run their city marathon for number 19 of 28.  With Cat 38 weeks pregnant I had expected to be going solo but one of my good mates, Mike Ward, volunteered to come with me.  I tried hard to find a […]

Invest In ME Resarch International Conference Week London 2019

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  Invest in ME Research has announced dates for events taking place in London for their International Conference Week in May 2019 on biomedical research into ME (Myalgic Encephalomyelitis). The second Thinking the Future conference for young or early career researchers will be on 28th May 2019. The ninth Biomedical Research into ME Colloquium (BRMEC9) […]

Tory Conference: Charity’s Silence On Universal Credit Deaths, Hours After Minister Announces £51m Funding

Benefits

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 […]

York Carers Centre News

York Carers Centre

    Carers Rights Day Friday 30 November 2018 is Carers Rights Day; a national campaign to help carers know their rights and what help is available in their local community. This year we are pleased to be able to give carers the chance to meet and talk about their rights with York’s two MPs; […]

For Your Tomorrow – A Book Of Great War Poetry

For Your Tomorrow

    To mark the Centenary of Armistice, Forgotten Veterans UK have produced this stunning publication which contains 25 of the Great War poems alongside modern pieces by FVUK members and supporters. This isn’t just a book of poems, from the start to finish the historical pieces along with the poems take the reader on […]

Stuart Murdoch – OMF Ambassador

Stuart Murdoch

  From The Open Medicine Foundation.   OMF Ambassadors support our research efforts and are helping build awareness of ME/CFS and chronic complex diseases worldwide. OMF Ambassadors are promoting our work through videos and messaging on their social media and websites, personal appearances, and face-to-face interactions with their communities and fans. In addition, they are invited […]

Fulford All Set For Popular Show In Aid Of Charities

Fulford Show

  By Daniel Willers in York Press.   RESIDENTS can enjoy a fun-packed afternoon in Fulford on Bank Holiday Monday. The annual Fulford Show is once again being held to raise money for local and national charities. It will take place between 1pm and 5pm on the School Lane playing field and in the Social Hall, Fulford. The […]

It’s Back – And More Bonkers Than Ever ! Micklegate’s Soapbox Challenge Ready To Roll

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  From YorkMix.   Wheels fixed? Check. Brakes tested? Check. Completely bonkers costume ready? Check. Across the city these last minute preparations are underway as York revs up for another day of daft stunts and wacky races. The York BID Micklegate Run Soapbox Challenge will see 40 hand-made carts hurtle down the city’s royal street in a […]

York Inter Company Fantasy Football League For The York ME TGA Shield 2018/19

FreeGreatPicture.com-19724-football

The York ME Community runs an Inter-Company Fantasy Football League sponsored by TGA Mobility. This is to help raise awareness of the illness that affects around 250,00 people in the UK, and 800 in the York area alone. Companies enjoyed a great 2017/18 season with NG Plumbing and Heating coming out on top and winning […]

The Cortene Chronic Fatigue Syndrome (ME/CFS) Drug Trial Begins

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  By Cort Johnson in Health Rising.   Since February, Health Rising has described the development of a new drug produced for chronic fatigue syndrome (ME/CFS) by a small pharmaceutical company named Cortene in three blogs: The Cortene Way: New Drug to Be Trialed in Chronic Fatigue Syndrome (ME/CFS) Soon – Pt. I Cortene II: A New […]

Centre Of Excellence For ME

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  This page is for the researchers funded by IiMER to communicate what they are doing, what experiences they have, what they think of research into ME, what they hope to achieve – and allow more communication with patients and the public. We hope this will help more people understand ME and the possibilities and […]

Purpleman Plans 22-Hour Marathon For Manchester Bomb Victims

Purple Man

  From Minster FM News.   The York street entertainer Purpleman is planning a tribute the victims of the Manchester Arena bombing which claimed the lives of a Mum and Dad from the city. He will stay out all night as part of a 22-hour marathon on Stonegate in their honour. It comes as York Minster […]

Why I Started A ‘Knitathon’ To Raise Awareness And Funds For ME/CFS

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  From The Mighty.   My name is Lauren Childs and I am the founder and organizer of the “All About M.E. Knitathon.” I live in the west midlands in England, UK. I wanted to create an awareness project which was going to be eye-catching and a way in which the ME/CFS forgotten individuals from […]

Invest In ME Research Biomedical Research Into ME (BRMEC) Colloquiums

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The Invest in ME Research Biomedical Research into ME (BRMEC) Colloquiums are research meetings organised by the charity to encourage biomedical research into ME and international collaboration amongst researchers. This has been one of the main objectives of the charity. Invest in ME Research began arranging biomedical research conferences in our first year and have continued them […]

A New Research Landscape Emerges In America

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    By Simon McGrath in ME/CFS Research Review.   Things are changing in the US for ME/CFS research as four new collaboratives set up and get to work. In September last year, the National Institutes of Health (NIH) announced $35 million of funding to establish three new ME/CFS research collaboratives and a supporting data […]

York Carers Centre News

York Carers Centre

May Bank holiday We will not be open on Monday 7 or Monday 28 May. We will not be checking our answer machine or emails on these days. If you need urgent help when we are closed please contact the Emergency Duty Team on 01609 780780.   Job opportunity We are recruiting for a Sessional Carer […]

Music4ME Newsletter Number 3

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  From Music4ME.   With just under three weeks to go until the Album is released things are moving along very quickly and this week we are releasing two powerful videos that highlight the courage and strength of people with M.E. Since we started this project we have seen highlighted, more than ever, how brilliantly […]

The Great Get Together 2018

Great Get Together

  In June 2017, we organised the biggest neighbourhood celebrations since the Jubilee street parties. We’ve heard from all quarters that we should do The Great Get Together again, so we’re beginning to plan another, for 22nd – 24th June 2018. We’re inviting people to get together with their neighbours to share food and celebrate […]

Trial By Error: Two Interview Podcasts, and “Conflicts of Interest”

David Tuller

  By David Tuller, DrPH.   For those not yet sick of my voice, here are two more chances to hear me reiterate variations of my message: On Monday morning, I was interviewed in Perth for the radio show Mornings with Gareth Parker, on the 6PR882 Talk Radio network. (Never mind that the description in the link […]

Trial By Error: My Australian Tour, Continued

David Tuller

    By David Tuller, DrPH.   Last week, I spent three days in Hobart, on the island of Tasmania. Besides strolling around looking for cafes where I could drink decent coffee and write, my main work-related activity was giving a talk at Menzies Institute for Medical Research, part of the University of Tasmania. About 40 people attended, […]

The Music4ME Project

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  An album of original songs and poetry composed and performed by people with M.E. from all over the world, will be released on ME Awareness Day, 12 May 2018. They may have been singers, performers, writers or musicians before they became ill and still have so much to give but are now too ill […]

Trial By Error: A Post About Andrew Lloyd

David Tuller

  By David Tuller, DrPH.   I know folks are eager to hear more about what I’m learning in Australia. I’m finding it challenging to have meetings, prepare for talks, conduct interviews, promote the crowdfunding, keep up with my BMJ Open correspondence, and also write posts about what’s happening here. It will take a bit of time […]

York Carers Centre

York Carers Centre

Vacancies Over the next couple of weeks we will be advertising various job opportunities. Please keep an eye out on our website www.yorkcarerscentre.co.uk for details.   Carers Action Group and Homecare Focus Group The next Carers Action Group (CAG) is on Tuesday 10 April, 10am to 12noon in the Penn Room at Friends Meeting House, […]

Mike’s EU Marathons For Invest In ME Research – Austria

Austria

  AUSTRIA I’ve interviewed 3 people with ME in Austria who have given me their account of life there with the illness. How did you get ill and how were you diagnosed? Sebastian:  Probably following an EBV infection at elementary school age. Sonja:  I had neuroborreliosis from 2011-2014, after which I was fine for 1 year. When […]

Trial By Error: My Time In Canberra

David Tuller

  By David Tuller, DrPH.   I’m in Sydney now, but last week I had a busy few days in Canberra. My hosts were the wonderful duo of Libby Steeper and Eleanor Flowers. They treated me like royalty and shepherded me around town to the various appointments they and others had organized. As a representative […]

A Consensus-Driven ME/CFS Clinician Coalition Takes Shape

Bateman Horne Center

    By Stephanie Griffin.   On March 2-3, 2018, the Bateman Horne Center hosted an exciting summit of leading U.S. ME/CFS clinicians who came together to share their pearls of wisdom on diagnosis and treatment in order to improve ME/CFS clinical care and refine more precise research targets. The meeting was remarkable for the ambitious nature […]

Much Can Be Done To Ease ‘Chronic Fatigue Syndrome’ Symptoms

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    By Miriam E Tucker in Medscape.   SALT LAKE CITY, UT — The illness commonly known as chronic fatigue syndrome is complex and currently incurable, but clinicians can still do a great deal to manage symptoms and improve patients’ quality of life, experts agree. In a 2-day meeting held March 2 and 3, […]

Trial By Error: News About My Plans

David Tuller

  By David Tuller, DrPH.   So I’ve been asked about my plans after June 30th, which is the end of the period covered by last year’s crowdfunding campaign. There’s been significant progress since I launched that effort. Among other developments, the CDC dropped its recommendations for CBT and GET, NICE decided to withdraw its preliminary […]

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