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.

Robert Burns Was No Peasant Poet, He Was A Master Of Self-Promotion

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  By Murray Pittock in The Conversation.   In the Edinburgh World Heritage website’s story about Scotland’s bard, it notes that when Robert Burns “the ploughman poet” came to the city in 1787, he was “a new boy in town and a great looking heart throb”. It’s a familiar description, dating back to the writer Henry Mackenzie’s review of […]

ME Debate In Parliament – Thursday 24th Of January 2019

Parliament

  Today is a huge day for those of us dealing with ME.  Carol Monaghan MP will be making our case for improved medical education and research funding in this illness.   Although these figures are now probably out of date and on the low side, it’s estimated that there are 250,000 in the UK, […]

Guidelines For ME/CFS Outdated And Dangerous

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By Felicity Nelson in Medical Republic.   NICE’s clinical guidelines still recommend potentially damaging treatments for chronic fatigue syndrome, but they won’t be updated until 2020. The 2007 NICE guidelines currently recommend the use of graded exercise therapy (GET), a treatment that only helps a minority of patients and can cause significant harm in some […]

10 Health Benefits And Uses For Turmeric Curcumin Supplements

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      From COGNITUNE Smarter Health.   Are you looking for a way to boost every facet of your health with a single spice? It sounds crazy, but turmeric curcumin with BioPerine may be the magic supplement we’ve been seeking. Turmeric benefits the body and mind in more ways than you can imagine. Similar […]

Trial By Error: My Six-Month Review

David Tuller

    By David Tuller, DrPH So it’s time again to review my work and figure out what I’ve been doing. My crowdfunding from last April has been covering my half-time position at Berkeley since July 1, so December 31 marks the end of the first six months. The Berkeley fiscal year ends June 30th, […]

Patisserie Valerie – Which Has Three York Branches – Goes Into Administration

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    By Dan Bean in York Press.   A CAKE shop chain with three sites in York has collapsed into administration. The move by Patisserie Valerie – which has branches in Feasegate, Coppergate and at the Designer Outlet – came following failed discussions with HSBC and Barclays to extend a standstill agreement on its […]

Universal Credit Is An Unmitigated Catastrophe For Ill And Disabled People

DWP Caxton House

      Written by Kitty S Jones in Politics and Insights.    I co-run an online advice and support group for people going through Personal Independence Payment (PIP) and Employment and Support Allowance (ESA) claims, assessments, mandatory reviews and appeals. Recently there has been a spike in people being reassessed for their awards of both kinds of […]

Stuart Murdoch’s Open Letter Ahead Of The ME Debate

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  By Stuart Murdoch in #MEAction.   Stuart Murdoch is the lead singer of Belle and Sebastian. He has had ME for 28 years and he has kindly shared with us this open letter to the UK government ahead of the ME debate on Thursday, 24th January. Dear UK Government, I am one of the […]

Double Legal Victory For Access Campaigner Over Underground Discrimination

Accessibility

    By John Pring in Disability News Service. A court has found that London Underground twice discriminated against a disabled campaigner by failing to warn him that vital lifts that would allow him to complete his journey on the capital’s tube network were out-of-order. Doug Paulley found himself stranded and confronted with inaccurate and incomplete […]

The Lost Years: A Personal Journey

Australia

  by Kathy Collett in ME Australia.  Kathy Collett has lived with Myalgic Encephalomyelitis for more than 30 years.  Frustrated by the lack of knowledge and dismissive attitude of doctors, Kathy conducted her own research to see what she could do to improve her health. Pre-internet, this was difficult but Kathy persisted and travelled overseas […]

The Monster Disease Medical Schools Don’t Mention

Llewelyn King

    by Llewellyn King in Inside Sources.   For 10 long years, I’ve been writing and broadcasting about Chronic Fatigue Syndrome, now called Myalgic Encephalomyelitis (ME). Like all chronic diseases, it’s brutally unfair to the afflicted. But ME also can claim to have been unfairly treated by doctors and medical researchers, the pharmaceutical giants, and the […]

A Watershed Moment Is Happening For Millions Of Missing People

Parliament

By Steve Topple in The Canary.   There will soon be a watershed moment for millions of chronically ill disabled people. Because what one MP described as a “medical scandal” will now face a full parliamentary debate. To read the rest of this story, click on the link below:   Link to ME story

Response To Vitamin B12 And Folic Acid in Myalgic Encephalomyelitis And Fibromyalgia

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    By Björn Regland, Sara Forsmark, et al in PLos ONE.   Abstract Background Patients with myalgic encephalomyelitis (ME, also called chronic fatigue syndrome) may respond most favorably to frequent vitamin B12 injections, in vital combination with oral folic acid. However, there is no established algorithm for individualized optimal dosages, and rate of improvement may […]

How We’re Designing Musical Instruments With The Help Of Disabled Musicians And VR

Music

      By Franziska Schroeder and Matilde Meireles in The Conversation.   Most new digital technologies tend to be designed with an able-bodied user in mind. The first desktop computers required fine motor skills to navigate software menus using a mouse, and mobile phones need users to press buttons, swipe screens, and so on. To […]

Changing The Narrative #2: Warring Factions, Divide & Rule And Death Threats

Valerie Eliot-Smith

    By Valerie Eliot Smith.   The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.  Introduction This is the second part of my series of posts on changing the narrative around the illness myalgic encephalomyelitis (ME). The first part of this series can be found at Changing the […]

Carol Monaghan MP Secures Backbench Debate On ME On 24 January 2019

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  Carol Monaghan, MP for Glasgow NW. SNP Spokesperson for Education, Armed Forces & Veterans, is delighted that @CommonsBBCom have granted a Backbench debate on #ME. This debate will take place on Thursday 24th January. Thanks to everyone who has campaigned to achieve this.

The Best, Most, Biggest And Least Of 2018 In Chronic Fatigue Syndrome And Fibromyalgia

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  By Cort Johnson in Health Rising.   The Best, Most and Least of 2018 A look back at a most interesting year which has to start with Cortene… Treatment Nicest Surprise It wasn’t supposed to go like this. First, in a disease like ME/CFS, you’re supposed find a repurposed drug or two to treat […]

What Exactly Is Myalgic Encephalomyelitis ?

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    By Torstein Egeland et al in Tidsskriftet.   Although there are good diagnostic criteria for myalgic encephalomyelitis, knowledge of the disease is often lacking and this can result in misdiagnosis and incorrect treatment. There is a need for more research, greater expertise among clinicians, and refinement of the diagnostic criteria. In the literature and […]

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

Ice Sculpture

  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

Research

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

brain-power

  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

Teaching

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

ME

    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’

Disability Parking

  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

Research

  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

Livingston HealthCare Orthopedic Department

  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

NIH

      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 […]

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