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.

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

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  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 ?

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    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

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  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 […]

Guest Blog: Life In The Slow Lane – Musings Of A Police Officer On A Diagnosis Of ME/CFS

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  From Disabled Police Association.   Colin Paine is a Detective Chief Superintendent in Thames Valley Police. He is currently working on the Police Spending Review with the NPCC. Here he reflects on his diagnosis of Myalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS).   Police work feels inherently fast paced. It is in the nature of our work that […]

Metabolomics Study Suggests Chronic Fatigue Syndrome May Be Oxidative Stress/Low Oxygen Disease

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    By Cort Johnson in Health Rising.   Disturbances in circulation and provision of oxygen to tissues could underlie many symptoms of ME/CFS. Metabolomics has quickly become one of the hottest research trends in chronic fatigue syndrome (ME/CFS).  The metabolomic work in ME/CFS started with the Australians, picked up speed when Ron Davis and […]

Who Has The Best Home In York ? New BBC Show Reveals All

YorkMix

  From YorkMix.   York is a wonderful place to live, and has lots of great properties. But who has the very best home in the city? That’s what a new BBC One series will find out. New property show The Best House in Town starts on Monday 11 February – and the first five episodes are set in […]

Disability-Themed Emojis Coming To Smartphones This Year

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    By Cristina Abellan Matamoros in euronews.   Disability-themed emojis will be the biggest addition to this year’s new batch of approved emojis. The new accessibility emojis were introduced after Apple proposed adding emojis of a guide dog, a hearing aid, prosthetic limbs and people using canes and in wheelchairs back in 2018. Apple had criticised the lack […]

The HRA Report Does Not Exonerate The PACE Trial, It Merely Confirms That Its Research Ethics Approval Was In Order

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  From Not The Science Bit.   Great news. The PACE Trial controversy has been resolved! Oh, wait…er, no it hasn’t. Rather, the spin cycle of eminence-based medicine continues. The UK’s Health Research Authority have released a report on their assessment of the beleaguered PACE Trial, and have concluded that they are happy with it. Cue the usual well-paid, eminent, professorial […]

Who Reviews ME/CFS Applications For NIH ?

Funding

    by Jennie Spotila in Occupy M.E. There is no question that NIH’s funding of ME/CFS research has been minuscule relative to the size of the public health crisis. Review of ME/CFS grant applications at NIH has drawn scrutiny from the public as one contributing factor. The public perception is that the grant review panelists have not been […]

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.   […]

What About M.E.? Living With A Little Known And Widely Misunderstood Neurological Disease

ME

    By Lori, in Rare Disease Day.   What About M.E.? Living with a Little Known and Widely Misunderstood Neurological Disease Myalgic Encephalomyelitis Chronic Fatigue Syndrome, or ME CFS for short, is the disabling disease that I’ve been diagnosed with and that has changed my life forever. First, some words about the disease itself. […]

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 […]

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