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.

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 […]

Pacing Is A Simple Concept. So Why Do I Find It So Hard ?

Pacing

      By Jo Moss in A Journey Through The Fog.   Living with a chronic illness like ME/CFS creates many challenges. Along with the multitude of symptoms, we also have to learn to adapt to the restrictions placed on our lives and to manage our limited energy levels. The term “pacing” crops up […]

Chronic Fatigue Syndrome: Research: Written question – 221619

Parliament

  Q Asked by Mrs Sharon Hodgson (Washington and Sunderland West) on 14 Feb 2019. Department for Business, Energy and Industrial Strategy Chronic Fatigue Syndrome: Research 221619 To ask the Secretary of State for Business, Energy and Industrial Strategy, how many grant applications have been made to the Medical Research Council for ME/CFS related research since 2010; how […]

My Label And Me: I’m Not Tired And Lazy, I Have ME

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  By James Wilson in The Metro. you’re just a bit tired,’ says my friend. ‘Just have another beer, you’ll be fine’. Yep, I am tired but probably not as they, or you, know and understand it. I can’t rest and get my energy back like you can and, as much as I’d like to, […]

Researchers Net New Theory On Vitamin D And Cognitive Disorders

Research

      From The University Of Queensland.   New research from QBI may explain why vitamin D is so important to brain plasticity, and how vitamin D deficiency leads to a range of cognitive disorders, including depression and schizophrenia. This paves way for new research that could lead to preventative strategies or better interventions […]

48 Hours In . . . York, An Insider Guide To This Ancient Walled City

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By Tina Walsh in The Telegraph.   York, where ancient and modern meet Everyone knows about York’s Roman and Viking history, but not so many people realise it has a wealth of luxury boutique accommodation and a thriving cultural scene, with cool neighbourhoods full of independent shops, restaurants and cafés, as well as countless museums, […]

21 People Describe What Sensory Overload Feels Like

Sensory

  By Melissa McGlensey in The Mighty.   Sensory overload happens when too much sensory stimulus is occurring at once — it can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting — or a hundred other things. It’s often associated with certain diagnoses like autism, sensory processing disorder, chronic fatigue syndrome, fibromyalgia, post-traumatic stress […]

ME And My ‘Friend’

Friend

  I want to Chat And things like that Like we used to do It hurts to talk It pains to walk But I’ll get myself to you.   I’ll get there, it’s not that far Travel by bus, too tough by car Vibrations turn senses into mire The slightest bump, the more I tire […]

The North To Wait Another Nine Months For Switchable Smart Meters

Smart-Meters

By Sam Meadows in The Telegraph.   People living in the North could have to wait as long as nine months if they want a smart meter thanks to technical issues with some of the new devices. Dr Alan Whitehead, Labour’s shadow energy minister, said ongoing problems with the technology meant that the £11bn roll-out […]

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 […]

The ‘Energy Bubble’ Analogy That Can Help Explain Pacing With A Chronic Illness

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    By Christina Baltais in The Mighty.   Pacing is about energy conservation, both physical and emotional. When you’re living with a chronic illness, it’s an essential skill for preventing flare-ups or “crashes.” This “energy bubble analogy” can be useful to help you visualize and understand the limits of your energy, and help you explain them […]

Every York Library – And The Archives – Will Stay Open For The Next 15 Years Under £32m Deal

Library

  From YorkMix.   All York’s 14 libraries – and its world-renowned archives – are guaranteed to stay open for at least 15 years. City of York Council have awarded a new contract to Explore Libraries and Archives Mutual Limited to deliver the city’s libraries and archives services until 2034, it was announced today (18 […]

We Need To Stop Talking About Chronic Illness In This Particular Way

chronic-illness

  By Annie M. In The Mighty.   Have you ever noticed how people talk about illness, even mild illnesses like colds? We often say we are fighting them. We battle colds and fight the flu. We call our friends with scary medical conditions “warriors,” and we encourage them in their “battle” against their illness. It’s true […]

Trial By Error: Professor Sharpe’s Retraction Requests

David Tuller

    By David Tuller, DrPH After this month’s release of the Health Research Authority’s PACE analysis, Professor Michael Sharpe sent e-mails to at least two US publications requesting a retraction or major correction of critical articles. Professor Sharpe’s e-mails accused the writers involved of suggesting that PACE was “fraudulent.” This accusation was not true. In […]

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,” […]

Chronic Fatigue Syndrome: Medical Treatments: Written question – 218214

Parliament

  Question by Frank Field MP. Chronic Fatigue Syndrome: Medical Treatments. 218214 To ask the Secretary of State for Health and Social Care, what steps his Department is taking in response to the resolution of the House of 24 January 2019 on appropriate ME treatment. Answer by Steve Brine: The Government is investing over £1.7 […]

The Basics: A Guide To Learning, Sharing And Making A Difference In Chronic Fatigue Syndrome (ME/CFS)

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    By Cort Johnson in Health Rising.   Welcome to Health Rising. This page is designed to give you basic information on chronic fatigue syndrome (ME/CFS) and provide opportunities for you to learn about it, share your experiences, and participate in bringing about the end of this disease. It is focused on the U.S. […]

14 Things People May Not Realize We Do Because Of Sudden Flare-Ups

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  By Cassidy Colbert in The Mighty.   Living life with a chronic illness is basically living life constantly walking on eggshells. One day you may be bouncing off the walls because you are so full of energy and the next you are lying on the cool bathroom floor — your only source of relief from the agonizing […]

Foldalite Travel Powerchair Review

Natasha Lipman

    But Natasha Lipman.   I can’t believe that it has almost been a year since I finally bought my first ever powerchair, the Rascal P321 (also called my ‘Mario Kart’ or ‘The Dizzy Rascal’ by my friends – cos I have PoTS and am always dizzy, gettit?) It truly was a long time coming, and […]

Facing Skepticism From Others That My Illness Isn’t ‘Real’

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  By Rebecca Handler in The Mighty.   Those of us with chronic illness are often forced to wage two wars at once. Not only must we cope with the immeasurable impact of our illness, but many of us also face the burden of skepticism from peers, the medical community, friends, and even family. If you’re anything […]

Newly Discovered Gene Governs Need For Sleep When Sick

Genetics

    From Neuroscience News.   Humans spend nearly one-third of their lives in slumber, yet sleep is still one of biology’s most enduring mysteries. Little is known about what genetic or molecular forces drive the need to sleep–until now. In a study of over 12,000 lines of fruit flies, researchers from the Perelman School […]

The Power Of Listening

Doctor

      By Naomi Whittingham in A Life Hidden.   In September 2016, I contributed to a training course for junior doctors at my local hospital.  The following was used as part of a seminar entitled “Patients and doctors as partners in learning”.  I used the term ME/CFS for this piece, as this is how ME is […]

So You Went Vegan In January – Now What ?

Vegan

    By Sophie Medlin in The Conversation.   Many people will have had their fill of cheese, chocolate and meat over Christmas and have felt much more energised after going vegan in January (an event known as Veganuary). This invigorating feeling is largely due to the increase in fruit, vegetables, nuts and pulses as opposed […]

Dealing With Anger Now That I Have Chronic Fatigue Syndrome

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  By Jamison Hill in The Mighty.   I love to break things. Yeah, I know, who doesn’t? But I get such a satisfying feeling when I break something. Maybe not a bone, or a really expensive gadget, but breaking something cheap and discardable is satisfying to me. Very satisfying! In 2011, after I was sick for […]

Masterswitch Discovered In Body’s Immune System

Scientist using a microscope

  From Science Daily.   University of ManchesterSummary:Scientists have discovered a critical part of the body’s immune system with potentially major implications for the treatment of some of the most devastating diseases affecting humans. The study could translate into treatments for autoimmune diseases including Cancer, Diabetes, Multiple Sclerosis and Crohn’s Disease within a few years. […]

Trial By Error: BMJ Amends Last Week’s PACE Article

David Tuller

    By David Tuller, DrPH.   Last Wednesday, the UK Health Research Authority released a letter reviewing its analysis of the PACE trial. Members and supporters of the GET/CBT ideological brigades have misrepresented the HRA letter as a vindication of the study. On Thursday, BMJ posted an article about the HRA letter by science journalist Nigel Hawkes. The […]

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 […]

Warning Over Scam Emails Claiming To Be From City Of York Council

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    By Simon Walton in York Press.   Fraudsters are sending fake emails claiming to be from City of York Council. The scam messages purport to be about council tax refunds – but they are trying to trick people into sharing confidential data. A spokesperson for City of York Council said: “Scammers are sending fake […]

The Emerge Media And Research Digest (017) 8th February 2019

Australia

    Friday 8th February 2019 Latest news and research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome   Welcome to the Seventeenth Emerge Australia Media and Research Digest!   To read the digest, click on the link below:     Link to ME Digest

Are Fluoroquinolones Causing Connective Tissue Disorders That Are Leading To ME/CFS ?

Research

    From Floxie Hope.   The symptoms of fluoroquinolone toxicity often mimic those of ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome). Many people suffering from fluoroquinolone toxicity experience debilitating fatigue, and some are bed-bound and permanently disabled from this symptom, along with all the others that come along with fluoroquinolone toxicity. Both fluoroquinolone toxicity and ME/CFS […]

A Winter’s Tale – A Former Mountain Climber Reflects On Post Exertional Malaise And ME/CFS/FM

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By Simon Parker in Health Rising.   Fifteen years ago I was diagnosed with Fibromyalgia and ME (aka Chronic Fatigue Syndrome), a debilitating condition that includes continual pain and delayed fatigue as its primary symptoms. I often find myself trying to explain to other people what the delayed fatigue is like by giving an example […]

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