Welcome To The York ME Community

Firstly, let me just say that The York ME Community is not a charity. I will not be asking you to put your hands in your pockets for cash. What I believe we need so much more at the moment is awareness of the illness and for that we need people who are learning about ME and therefore able to tell others. There are ME charities, and if in the future you or your business wish to do a charity run or whatever in aid of ME, I will happily help and support that aim.

Thinking Of Others……

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      It occurred to Pooh and Piglet that they hadn’t heard from Eeyore for several days, so they put on their hats and coats and trotted across the Hundred Acre Wood to Eeyore’s stick house. Inside the house was Eeyore. “Hello Eeyore,” said Pooh. “Hello Pooh. Hello Piglet,” said Eeyore, in a Glum […]

Inside The Mind Of A Chronically Ill Person Debating If They Should Post On Facebook

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  By Jennifer Steidl in The Mighty. Nobody is “normal.” Everyone is unique. That said, long-term illness can change a person; it can change your mind, your emotions, your perspective, your way of thinking… (to say nothing of your body). And the places in your mind that change can be impossible to perceive; what is caused by […]

Things Like This Stop Me From Living My Life The Way I Want To

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By julieannereynolds in Scope. Bal is a post graduate student at Staffordshire University, disability activist, former President of their Student Union and has Generalised Dystomia. In this blog Bal shares her campaign story to ensure taxi fares charge the same for all and how she helped change the law. In 2015 I led a campaign to […]

Overactive Immune System ‘May Trigger ME-Like Symptoms’

BBC News

  By Laurel Ives, BBC Health. An overactive immune system may help explain the cause of chronic fatigue syndrome, scientists from King’s College London have suggested. Many sufferers of CFS, or ME, say their condition began with a challenge to their immune system like an infection. The scientists studied 55 patients with Hepatitis C who were […]

The Verdict: Dame Berwick Kaler’s Grand Exit After 40 Years Of York Pantomimes

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  By Charles Hutchinson in The Press.   It began as a celebration of 40 years of the Grand Old Dame of York, and it still is, but York’s favourite adopted son from Sunderland has now called time on pantomime at 72, and so the impromptu standing ovation for Berwick Kaler was inevitably suffused with sadness too. Ever the […]

Trial By Error: The View From Norway

David Tuller

    By David Tuller, DrPH. I spent the last week of November in Oslo. The Norwegian ME Association invited me to give a couple of talks and have some meetings with public health officials. The city was charming, even if dark and overcast at this time of year. Not surprisingly, the same tussle taking […]

Mistle-Tea And Wine – Yorkshire Teapee Opens In York

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  From The Yorkshire Times.   Yorkshire Tea and the Star Inn The City restaurant in York have teamed up to launch an exciting Yorkshire Tea-themed festive pop-up, which will be open to all over the Christmas period. The acclaimed restaurant’s popular riverside terrace is being transformed into a winter wonderland to be known as […]

9 Rounds Of Electroshock Therapy. 6 Years Lost. All Because Her Doctors Got It Horribly Wrong

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    By Michele Lent Hirsch in Cosmopolitan.   She’s lying on a gurney in a white room, a blanket covering her body, an IV pinched into her arm. A nurse is sticking electrodes to the side of her head, like stickers. Soon they’ll send electric currents into her brain, inducing a seizure. She’s aware […]

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 […]

York Brewery Goes Into Administration – Three Pubs Also Hit

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York Brewery has gone into administration, YorkMix can reveal today. Parent company Mitchells Of Lancaster (Brewers) Ltd have been put into administration, taking York Brewery Co Ltd with it. Staff at the Toft Green brewery were told this morning. It also owns three pubs in the city which are affected. A brewery spokesman told YorkMix: All I can […]

Death in Chronic Fatigue Syndrome (ME/CFS) – What Has It Told Us ? The Autopsy Files

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    By Cort Johnson in Health Rising.   It’s always hard to lose a loved one, but the deaths in ME/CFS seem particularly hard. They tend to be quite painful, they often take place in the midst of a non-supportive medical system, and they’re a complete mystery. With no seeming way out it’s no […]

Ruins: An ME Senior’s Perspective

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  By Eileen Rosenbloom in #MEAction. You might think aging with myalgic encephalomyelitis (ME) is a seamless dance where an illness catches up with a stage of life. As people age with their own set of ailments, you’d hope this latter stage would offer a welcome mat of normalcy. Our healthy peers would like us […]

John Barry’s Early Years: The Full Story

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  A new book about the John Barry Seven is the definitive account of the composer’s early years. STEPHEN LEWIS reports in The Press. IN September 1957, a young rock and roll seven-piece calling themselves the John Barry Seven managed to land a much-sought-after audition on the BBC Light Programme, radio’s premier music outlet. It […]

Tragedy In Bjärred – Increased Knowledge About ME Is Needed

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  From The National Association for ME patients.   In January 2018 a tragedy occurred in Bjärred, a family found deceased in its villa. Today, the police reported that parents chose to end their own and daughters lives and that both girls had been diagnosed with ME. RME deeply deplores the tragic development, our thoughts go […]

Living In A World Apart

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  By Suzan L. Jackson in ProHealth.   Holiday season is upon us, and that fills me with dread because it means lots of visits with extended family who see us only rarely. Our invisible illnesses become even more invisible at these times. I have been able to improve my condition and my son’s greatly […]

Dunkirk Veteran Unveils Centrepiece At Catterick Garrison

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  By Cat Soave in The Press. History was made today at Catterick Garrison, when four monuments were unveiled to create a centrepiece to commemorate the fallen and marks the 100th anniversary of the Armisitice at the end of the First World War. Mr David Evans, of Leyburn, a former cavalryman with the 13th/18th Royal […]

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome In The Era Of The Human Microbiome: Persistent Pathogens Drive Chronic Symptoms By Interfering With Host Metabolism, Gene Expression, And Immunity

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      By Amy Proal and Trevor Marshall in Frontiers in Pediatrics.   The illness ME/CFS has been repeatedly tied to infectious agents such as Epstein Barr Virus. Expanding research on the human microbiome now allows ME/CFS-associated pathogens to be studied as interacting members of human microbiome communities. Humans harbor these vast ecosystems of […]

Let’s Not Judge Others For Not Drinking – Especially At Christmas

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  By Stefano Hatfield in iNews. “Come in,” said our jovial, generous host. “Take your coats off, have fun, get smashed.” Words I imagine have been said across Britain this weekend as festive party season truly kicks in. Except that you could swap “smashed” for trollied, trashed, pissed, or any other of the other euphemisms […]

Malayan Tiger In Crisis

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  By Kae Kawanishi in malasiakini. Saving the tiger will ensure that future generations continue benefiting from a healthy ecosystem. The extinction of the charismatic top predator, however, is just one indication of humans’ misplaced priorities and short-sightedness destroying our only home. The Malayan tiger (Panthera tigris jacksoni) is about to go extinct in the wild. Because […]

Disabled Peer Calls For ‘Heavy Fines’ For Air Travel Access Failures

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By John Pring in Disability News Service. A disabled crossbench peer has called on the government to start handing out “heavy fines” to the air travel industry when it fails to ensure that its services are accessible to disabled passengers. Baroness [Jane] Campbell asked the government on Monday what action it was taking to encourage all UK […]

Those Pop-Up ‘I Agree’ Boxes Aren’t Just Annoying – They’re Potentially Dangerous

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  By Sabrina Rau in The Conversation. Have you noticed the increasing number of pop-ups asking you to consent or “agree” when you visit a website? Do you find these annoying and tend to just click accept without reading the policies? So do most people, and here’s why that’s a problem. By “agreeing” to any of […]

Accurate Diagnosis Of Myalgic Encephalomyelitis And Chronic Fatigue Syndrome Based Upon Objective Test Methods For Characteristic Symptoms

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  By Frank NM Twisk in World Journal of Methodology. Abstract Although myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are considered to be synonymous, the definitional criteria for ME and CFS define two distinct, partially overlapping, clinical entities. ME, whether defined by the original criteria or by the recently proposed criteria, is not equivalent […]

UN Day Of Disabled People: Government Could Face Court Over Universal Credit

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  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 […]

Nationwide Joins Purple Light Up Movement To Recognise Contribution Of Disabled Employees

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  By Sid Hayns-Worthington in the Swindon Advertiser.   The society’s Employee Disability Network organised sessions at the HQ to have open conversations about obsessive compulsive disorder, dementia, understanding anxiety and stress, and also included a mental health resilience workshop. The company held around 35 events across the country, coinciding with International Day of Persons with Disabilities […]

Motability Charity Boss To Go After Extra Bonus Revealed

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    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 […]

Shining A Light On Chronic Fatigue Syndrome, A Little Understood Disease Among Doctors

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  By Jennie Spotila, in the Inquirer.   I recently went to a new doctor. He looked over my chart: “Chronic fatigue syndrome,” he read, and then he glanced up at me. “You don’t look tired,” he quipped. “There, I made it go away.” I’ve been sick for 24 years, and I get comments like […]

More People Are Experiencing Severe Food Allergies Than Ever Before

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  By Mattew Smith in The Conversation.   The recent inquest into the death of Natasha Ednan-Laperouse from anaphylaxis after eating a Pret A Manger baguette she was unaware contained sesame, could lead to a change in labelling legislation. Indeed, a recent investigation found that undeclared allergens were present in a quarter of foods sampled. But a more fundamental issue […]

Could Poor Microcirculation Be Causing Chronic Fatigue Syndrome (ME/CFS) ?

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  By Cort Johnson in Health  Rising. Could the microvascular system – the small capillaries and the red blood cells that run through them – hold the key to energy problems in chronic fatigue syndrome (ME/CFS) and perhaps fibromyalgia? The idea that the blood delivery system – not some metabolic derangement per se – is […]

‘Invisible’ Disabilities Campaign Calls On Community To ‘Think Outside The Chair’

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  By Laura Collins and Lucy Robinson in ABCNews Australia.   Living in an Australian society that understands and accepts all forms of disability is no longer a pipedream for New South Wales woman Marni Walkerden. Ms Walkerden is the brains behind the Think Outside the Chair campaign, which is launching in the NSW central […]

‘Unparalleled’ Iron Age Warrior Grave Uncovered Near Pocklington

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      By Megi Rychlikova in The Press. For seven months, experts worked in secret to excavate two barrows near the East Yorkshire town. Each was constructed more than 2,000 years ago. Inside one was the only Iron Age chariot with standing horses found in Britain and the body of a warrior in his late 40s […]

Tips For Newbies With Fibromyalgia And/Or Chronic Fatigue Syndrome (ME/CFS)

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  By Cort Johnson in Health Rising.   Having any disease is scary, but having chronic fatigue syndrome (ME/CFS) and/or fibromyalgia (FM) often adds a hefty dose of confusion and bewilderment to that fear.  Not only are people with ME/CFS and FM typically exhausted and in pain, but problems with short-term memory and information processing […]

The UK ME/CFS Biobank: A Disease-Specific Biobank For Advancing Clinical Research Into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

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  By Eliana M. Lacerda et al in Frontiers in Neurology.   Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling disease characterized by unexplained incapacitating fatigue, accompanied by variable multi-systemic symptoms. ME/CFS causes a significant personal and public health burden, and urgently requires the coordination of research efforts to investigate its etiology and pathophysiology and to develop […]

Trial By Error: Some Good News On Cochrane

David Tuller

  By David Tuller, DrPH. In what can only be characterized as a welcome surprise, Cochrane has rejected the revision of a 2014 review of exercise treatments for chronic fatigue syndrome, stating that the work does not meet the organization’s “quality standards.” Cochrane revealed the decision late Friday in a statement appended to the review, which itself […]

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