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.

Fire, Ice And A Carving Wall – Here’s What’s Planned For The York Ice Trail 2019

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  From YorkMix.   The York Ice Trail is on its way, with some spectacular new additions. Taken out of the Christmas frenzy, the event has been moved to help boost a quieter time of year. It runs on Saturday 2 February, between 10am-6pm. It’s the biggest outdoor ice trail in Britain – 35,000 people visited […]

Changes In The Transcriptome Of Circulating Immune Cells Of A New Zealand Cohort With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

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By Eiren Sweetman et al in Sage Journals.   Abstract. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a poorly understood disease affecting 0.2%–2% of the global population. To gain insight into the pathophysiology of ME/CFS in New Zealand, we examined the transcriptomes of peripheral blood mononuclear cells by RNA-seq analysis in a small well-characterized patient group […]

Neuroinflammation And Cytokines In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Critical Review Of Research Methods

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By Michael B. VanElzakker, Sydney A. Brumfield and Paula S. Lara Mejia in Frontiers in Neurology.   Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is the label given to a syndrome that can include long-term flu-like symptoms, profound fatigue, trouble concentrating, and autonomic problems, all of which worsen after exertion. It is unclear how many individuals with this diagnosis are […]

Neuroinflammation Review By #MEAction Research Fellows

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  By Jaime in #MEActionNet.   Though science may speed along a bit fast to ‘catch’ on audio, you can also listen to me read this article on #MEAction’s Soundcloud here. We are pleased and proud to announce that our two research fellows, Sydney A. Brumfield and Paula S. Lara Mejia, have written and released their first […]

Opinion: Teaching Unions’ Stance On Education Plans For Students With Disabilities Sets A Worrying Precedent

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By Adam Harris in thejournal.ie.   As schools open up across Ireland this week, it is business as usual for most students. They will be taught by the same teacher, in the same way, with the same curriculum and supports that were always in place. Indeed, after a day or two, it will probably feel […]

What It’s Like To Live With Chronic Fatigue And Depression

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    By Eleanor Segall in Metro Lifestyle.   Chronic fatigue syndrome, also known as ME (myalgic encephalopathy) is estimated to effect 250,000 people in the UK. It is a serious and debilitating illness that at times can render its sufferers unable to function effectively due to the level of fatigue. ME is more than just exhaustion. […]

Company Praised For ‘First Accessible Parking Bay For Charging Electric Vehicles’

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  By John Pring in Disability News Service.   Campaigners have welcomed the decision to install what is believed to be the country’s first accessible parking bay for disabled people who need to recharge their electric vehicles. Only holders of blue parking badges who also need to recharge their electric vehicles will be allowed to […]

A Brightening Future: The State Of ME/CFS Research

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  By Simon McGrath in ME/CFS Research Review.   OPINION Although there are no treatments for ME/CFS on the horizon, things are looking up thanks to recent findings and a substantial increase in the amount of high-quality research. The field still needs much more funding. Do you remember the buzz around rituximab? Oncologists Dr Fluge […]

Nine Journeys In One Day Expose ‘Sham’ Of National Express ‘Accessible’ Coaches

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  By John Pring in Disability News Service.   A disabled campaigner who took nine journeys on the same day to check the accessibility of the services provided by the UK’s largest coach operator experienced signifcant problems on all but one of them. Wheelchair-user Doug Paulley had booked assistance in advance for services between Leeds and Bradford […]

Mitochondria Play An Unexpected Role In Killing Bacteria

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By KATARINA ZIMMER, in The Scientist.   EDITOR’S CHOICE IN CELL & MOLECULAR BIOLOGY The paper B.H. Abuaita et al., “Mitochondria-derived vesicles deliver antimicrobial reactive oxygen species to control phagosome-localized Staphylococcus aureus,” Cell Host Microbe, 24:625–36, 2018. According to biology textbooks, a macrophage engulfs a bacterium, internalizes it in a toxin-filled vesicle called a phagosome, then shuttles the […]

Opinion: Disability Must Be Considered In Auto Development

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    By Henry Claypool In The Detroit News. Saturday marks the opening of the 2019 NAIAS Detroit Auto Show, led by its presentation series on the future of the automobile, Automobili-D. Conference attendees can expect panels on innovations such as vehicle to infrastructure connectivity, urban mobility, smart cities, building a mobility workforce, ride sharing, cybersecurity and […]

Perceptions Of Chronic Fatigue Syndrome In The Emergency Department

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  From Georgetown University Medical Center.   WASHINGTON (January 10, 2019) — Findings from a novel online questionnaire of people with chronic fatigue syndrome (CFS) who rated their perceptions of care in a hospital’s emergency department suggest the majority of these patients do not receive proper care, say researchers from Georgetown University Medical Center. The study, […]

The NIH Is Thwarting Research On A Poorly Understood Yet Serious Condition

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      By JENNIFER SPOTILA in statnews.com.   When I first developed myalgic encephalomyelitis in 1994, I had no idea that I would be just as sick 25 years later, or that there would still be limited scientific understanding of the disease and no effective treatments. Nor did I imagine that my career as a lawyer was over, and […]

Rudd Has Not Delayed Roll Out Of Universal Credit, DWP Confirms

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  By John Pring in Disability News Service.   The roll out of the government’s much-criticised universal credit benefit system has not been delayed and will proceed as planned, the Department for Work and Pensions (DWP) has confirmed. Reports at the weekend suggested that new work and pensions secretary Amber Rudd had decided on a […]

Living My Life In The Grey Area Of Disability

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    By Victoria Venable in The Mighty.   When people talk about the “isms” in society, racism and sexism are usually the first that come to mind. Later in the list comes ageism. Often forgotten and misunderstood, is ableism. Ableism: Discrimination or prejudice against individuals with disabilities. In the last nine months of my […]

Changing The Narrative #1: Exploring A New Approach To Strategic Communications In The ME Community

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    By Valerie Eliot Smith in valarieeliotsmith.com.   The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.  IntroductionI strted writing this blog in 2012. For several years since then, I have kept starting drafts on a particular topic, only to then abandon them because the subject-matter is complex […]

Two Friends From Rome Bring Authentic Italian Street Food To York

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    From YorkMix.   Two friends from Rome have brought the authentic taste of Italian food to the streets of York. Alessandro Venturi and Robin George this week opened up A’Roma Pasta Bar on Silver Street, next to Shambles Market. It serves up a mix of home-made pasta dishes, bread and cakes. And they […]

Sunlight Offers Surprise Benefit — It Energizes Infection Fighting T Cells

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    From Science Magazine.   Sunlight allows us to make vitamin D, credited with healthier living, but a surprise research finding could reveal another powerful benefit of getting some sun. Georgetown University Medical Center researchers have found that sunlight, through a mechanism separate than vitamin D production, energizes T cells that play a central […]

Riddle Of The Quiet Killer

Australia

  From The Sydney Morning Herald. Alison Hunter used to say she had lemonade in her legs and “shimlers” in her face. Still in primary school when she first became ill, those were the words she chose to describe the bizarre and frightening sensations that afflicted her. Vocabulary was still an issue when Alison died. […]

4 Strategies For Dealing With Chronic Illness

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  Having chronic illness or pain can be very frustrating and debilitating. It affects all areas of your life and your physical as well as your emotional well-being. The upside is that it can be manageable with the right approach and mindset. Review the following four strategies so that you can better deal with chronic […]

Trial By Error: My Norwegian Interview

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    By David Tuller, DrPH In addition to giving a couple of talks in Norway, I also answered some questions from Trude Schei, assistant Secretary General of the Norwegian ME Association. I doubt I said anything I haven’t stated many times before. However, members of the GET/CBT ideological brigades–in Norway and elsewhere–continue to maintain […]

18 Things I Learned In 2018

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    From the Life Of Pippa blog.   Although I’m not a particularly superstitious person, there’s always been something about the number 18 in my family. It’s when all the birthdays and anniversaries and life events seem to fall, it’s the addresses we live at, and it always seems to be an intrinsically lucky […]

Opinion: ‘Nobody Should Have To Live Like This – I Need More Care To Meet My Basic Needs’

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  By Corina Duyn in the journal.ie.   I have been ill with Myalgic Encephalomyelitis (ME) for 20 years. But it is only in the last year, and especially in the past six months that my most basic needs are not being met – at a time when my illness has become more severe and […]

Officials Fail To Collect Data On People Wanting To Apply Offline For Online-Only Universal Credit

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  By Simon Rushton in iNews.   Officials behind Universal Credit are being criticised for failing to track data on people who want to apply offline. Universal Credit is the government’s first digital-only service, and claimants must apply online for the Department of Work and Pensions benefit. But there worries that the system is excluding […]

‘Widespread And Dangerous’: Facing Medical Uncertainty, Some Doctors Tell Patients It’s All In Their Heads

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  By Elizabeth Cohen, CNN.   (CNN)When 7-year-old Bailey Sheehan arrived at a hospital in Oregon partially paralyzed, a doctor said the girl was faking her symptoms to get her parents’ attention because she was jealous of her new baby sister. But that doctor was proved wrong when an MRI showed that the girl had acute […]

Study Shows That Red Blood Cells Are Stiffer In People With ME

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  By Marilyn Simon-Gersuk in #ME Action. Researchers have published a paper that shows various measures of deformability in the red blood cells of people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) indicating that they are significantly stiffer in people with ME/CFS than those from healthy controls. The observations suggest that red blood cell transport through microcapillaries may […]

ME Patients Face UK Ban On Donating Blood

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An old story, but worth repeating for those who believe ME is all in our minds. By Michelle Roberts in BBC News. Patients with ME will no longer be able to donate blood in the UK under new safety guidelines. Officials say the ban, starting on 1 November, is designed to protect the health of […]

Government Announce Consultation For Mandatory Changing Places

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    by Katie Campbell in Unite. The government have announced a consultation which will go ahead this year to examine proposals which will make it mandatory for newly build shopping centres, stadia, and theme parks to include Changing Places. Announced by Conservative MP Rishi Sunak on Christmas Eve, the proposal will ensure all newly built public […]

4 Essential Limitations To Set When You’re Chronically Ill

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By Tony Bernhard J.D. in Psychology Today? For many years after I became chronically ill, I was in denial about the need to set limitations in order to keep my symptoms as manageable as possible. I refused to believe that I might not recover my health. I thought: “You get sick; you get better. It’s as […]

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