The York ME Community

Leaving Frailty Behind. A Conversation With Laura Hillenbrand

Laura Hillenbrand

  By Paul Costello in Stanford Medicine.   She is an author of extraordinary success. Laura Hillenbrand’s Seabiscuit and Unbroken are literary phenomenons: Together, there are more than 13 million copies in print, and both have been made into blockbuster motion pictures. Seabiscuit, published in 2001, tells the story of a racehorse that captured America’s heart during the Great Depression. Unbroken, […]

Is The Brain Causing The Small Fiber Neuropathy In Fibromyalgia (And ME/CFS ?)

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    By Cort Johnson in Health Rising.   It seemed ever so clear. The reduction in the number of small nerves in the skin and eyes of roughly forty percent or so of the people with fibromyalgia (FM) and chronic fatigue syndrome (ME/CFS) must bring the body – as opposed to the brain – into […]

Top 7 Tips for Claiming Disability Benefits With M.E.

Benefits

  By Ann Innes in The ME Association.   I’m Ann Innes, consultant welfare rights adviser to the ME Association and formerly to Stockport ME Group. I run a private service to support people throughout the claims process, from benefit entitlement checks, application, preparing for the face-to-face assessment and attending as an advocate, all the […]

More Than Half Of Disabled Passengers Still Find Air Travel Difficult, Says Regulator

Air Travel

    By John Pring in Disability News Service.   More than half of passengers who describe themselves as having an impairment that limits their day-today activity find travelling by air difficult, according to a regulator’s annual report on access at the UK’s major airports. The Civil Aviation Authority’s (CAA) annual report on disability access contains […]

My Disabilities Are Invisible. I Shouldn’t Have To Prove Them To Strangers

Invisible Illness

  By Isabelle Jani-Friend in The Guardian.   I was recently on a packed Central line train into London. Luckily, I managed to take the last priority disabled seat. My osteoporosis and the fatigue I experience meant it would be hard for me to stand for the 40-minute journey to Oxford Circus. I felt a […]

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

Lost

    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 repeatedly […]

Trial By Error: An Ill-Informed Article In The Guardian

David Tuller

      By David Tuller, DrPH People who know little or nothing about the illness or cluster of illnesses variously called myalgic encephalomyelitis, chronic fatigue syndrome, CFS/ME, and ME/CFS can’t seem to stop writing stupid and ill-informed stories about it. And Professor Michael Sharpe seems to blame “Americans”–rather than his own disastrous research–for his […]

Planning Breach Claim Over Site Of 1066 Battle Of Fulford

Battle

  By Mike Laycock in The Press.   AN ARCHAEOLOGIST claims planning conditions have been breached at York’s biggest current housing development on the site of the 1066 Battle of Fulford. Chas Jones said an interpretative trail of the Germany Beck site should have been created by developer Persimmon before the first of 650 new homes was occupied. […]

Anna spends 22 hours a day in bed. But experts hope they’re close to a cure

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      By Melissa Cunningham in The Sydney Morning Herald.   Anna Kerr often spends up to 22 hours a day in a darkened room unable to get out of bed. Following her first pregnancy, the Thornbury mother-of-two felt something was amiss. At first, it was a newfound reaction to wine and coffee, triggering nausea, weakness […]

The Frail Teenager Set To Spend All Of Her Summer Holidays In Her Bedroom

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    By Mark Smith in Wales Online.   Lola Brandrick, 13, from Swansea, is crippled by pain and is constantly exhausted. While all her school mates are out enjoying their summer holidays, poor Lola Brandrick can only dream of joining them. The 13-year-old is confined to her bed, constantly exhausted and crippled by widespread […]

Words From A Hidden World

Blog

    By Naomi Whittingham.   Welcome  to my blog.  The main purpose of this site is to bring together my existing work, but I also hope to add new writing from time to time.  I have never blogged before and am looking forward to the freedom of writing as I wish, with full editorial control.  (The downside is […]

New Hub Of ME/CFS Research Opens At Harvard Plus The “Hidden Gem” And New Insights

Scientist using a microscope

    By Cort Johnson in Health Rising.   Times are changing. The Stanford area with its bevy of researchers and doctors (Ron Davis, Robert Phair, Mark Davis, David Kaufman, Bela Chedda, Jose Montoya, Rahim Esfandyapour, Michael Zeineh, Fereshteh Jahanbani and others) seemed like “it” for ME/CFS. But look at Boston now! A new hub […]

Because Of ME, I Can Only Imagine Being The Mum That Others Get To Be

childcare

      By Sophie Cooklynne in The Mighty.   Downstairs, my two-year-old son, Lucas, is playing. He’s a beautiful, clever and sweet little boy who lights up my entire world. Upstairs, I lie in a single bed, trapped in the shell of a body; bedridden permanently and suffering dozens of symptoms that mean that […]

Ten Top Tips For Accessible Recruitment

Accessibility

    By  Jo Verrent in Unlimited.   Unlimited, in its current form, has been recruiting for disabled trainees since 2013. What have we learnt about accessible recruitment? Jo Verrent, Senior Producer for Unlimited, gives us her top ten tips… Target where you advertise – find out where disabled people might be, and go out of your […]

The Impact Of ME

Scope

  By Jenny in Scope.   Hi, my name is Jenny and I’m 24 years old. I’ve had Myalgic Encephalomyelitis (M.E) for 5 years but have been experiencing chronic pain and fatigue caused by multiple health problems from the age of 16. One of my hobbies is writing my blog: This thing they called recovery. The […]

When I Can’t Control How Chronic Illness Is Affecting My Body

Chronic

  By Laurel Younis in The Mighty.   OK, here it – the biggest and most important secret you will need to survive chronic illness. The key to surviving chronic illness is surviving it in any way you can. Now I know what you may be thinking, “Really? Is this seriously the advice you’re giving […]

Netflix Sued For Defamation By ‘Afflicted’ Subjects Who Say Docuseries Painted Them As “Crazy Hypochondriacs”

Netflix

    By Erik Pedersen in Deadline.   The 50-page complaint (read it here) was filed Wednesday in Los Angeles Superior Court by defendants including Jamison Hill, Pilar Olave, Jill Edelstein and Bekah Dinnerstein. Referred to in the suit as “the Afflicted Four,” they claim they were “duped by Plaintiffs into participating in a salacious reality […]

Phoebe & Georgina’s Sponsored Kayak !

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    By Georgina & Phoebe in Let’s Do It for Myalgic Encephalomyelitis.   Even a live Second World War grenade  couldn’t stop us! On Sunday the 28th of July we began our quest to conquer a 25 mile kayak to raise money for Invest In ME Research. This journey consisted of a very early start, […]

Finding Accessible Work With A Chronic Illness

Life of Pippa

    From the Life of Pippa Blog.   Since I started blogging, there’s one question I’ve consistently been asked more than any other: how I found my flexible, work from home opportunities. If you don’t already know, I split my time between social media management and content creation in the charity sector, self-employment as […]

Are Shared E-Scooters Good For The Planet ? Only If They Replace Car Trips

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  By Jeremiah Johnson, Associate Professor of Environmental Engineering, North Carolina State University.   Shared dockless electric scooters, or e-scooters, transport riders over short distances in cities. Ride share companies promote them as an environmentally friendly choice that reduces dependence on cars. To properly assess these claims, it’s important to consider all relevant environmental factors, including the materials and energy […]

Capita Seeks To Reverse ‘Reputational Damage’ After Death Of Claimant

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    By Michael Buchanan Social affairs correspondent, BBC News.   Benefit-assessment company Capita is going to court to try to reverse the “reputational damage” it says it suffered after a claimant died. Victoria Smith died months after her personal independence payments were stopped following a Capita assessment. The outsourcing company was ordered to pay £10,000 […]

Heatwaves And Flash Floods: Yes, This Is Britain’s ‘New Normal’

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  By Hayley J. Fowler in The Conversation.   “It’s hard to believe, isn’t it, that we had a heatwave just last week?” Those words were spoken by a BBC news presenter, in front of graphic images of fire service rescues, as heavy rain caused floods and landslides which closed many roads and railway lines. In […]

Aid Without Asking: How To Support Someone With ME

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  By Jonny Foster in #MEAction.   The love of my life battles ME/CFS. It’s a disease that my father has also struggled with since I was a boy, so it’s one I know well. I knew life wasn’t going to be simple when we met, but I dove in head-first anyway. I can’t say […]

Myalgic Encephalomyelitis Diagnosis, Treatment & Prognosis

Doctor

    by Louise Sargent in ME Support.   Diagnosis There is no test or cure for Myalgic Encephalomyelitis (M.E.) but there are guidelines to help doctors diagnose and treat it. It can take a long time for the condition to be diagnosed, as other conditions that cause similar symptoms need to be ruled out first. Therefore, you […]

Tracking Peripheral Immune Cell Infiltration Of The Brain In ME

brain-power

    Principal Investigator Prof. Jarred Younger Institution University of Alabama, Birmingham, Alabama, USA Start date June 2018 Background and aim Many of the characteristic symptoms of ME/CFS suggest that the immune system is activated in the brains of people with the illness, leading to the release of inflammatory chemicals. This neuroinflammation is known to […]

“This Is What Disabled Looks Like”: The Sometimes Hard-To-See Line Between Visible And Invisible Disabilities

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  From the CoffeeSpoonie Blog.   There are disabilities we think of as visible, and disabilities we think of as invisible. (Mental illness? Invisible. Quadriplegia? Visible. Autoimmune disease? Invisible. Blindness, with a cane and guide dog? Visible.) Neat little categories that we are expected to sort our disabilities into, to help others understand better when […]

Accessible York – Encouraging Inclusive Tourism In North Yorkshire

Life of Pippa

  From the Life Of Pippa Blog.   Back in September 2013 when I moved to York for university, it’s safe to say my new friends and I fully made the most of life in the city and all it had to offer. As a non-disabled student at the time, there were no barriers holding […]

Revealed: York’s Best And Worst Performing GP Surgeries, As Ranked By Patients

Doctor

    From YorkMix.   York’s best and worst performing GP surgeries – as voted for by patients – have been revealed. The results of the annual NHS GP Patient Survey have been published. It asks patients for their views on issues like   how easy it is to make an appointment how helpful receptionists […]

#MEAction Responds To Attacks On ME Community In The Guardian And Psychology Today

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  By #MEAction.   In the past two weeks, The Guardian UK and Psychology Today US have published articles portraying the myalgic encephalomyelitis (ME) community as an angry, misguided mob using social media to denigrate scientific research. Both articles focus on the criticism that Dr. Michael Sharpe, one of the key authors of the PACE trial and […]

Holiday Firm Collapses After 29 Years In York – 250 Jobs At Risk

Super Break

  From YorkMix.   Holiday firm Super Break, which has operated out of York since 1990, has ceased trading. Parent company the Malvern Group, which incorporates Superbreak Mini Holidays Limited as well as Manchester-based Late Rooms Limited, is insolvent. It issued a statement today (1 August), which said: We regret to advise that Superbreak Mini-Holidays Limited (trading […]

It’s OK To Feel Angry Or Resentful Sometimes When You Have A Chronic Illness

Chronic Pain

  By Juliana Philippa Kerrest  in The Mighty.   Something I greatly struggle with are the emotional ups and downs that come with dealing with a chronic illness. I have three chronic conditions that have affected me to varying degrees throughout my life: psychological, neurological, and autoimmune. Most of the time, I handle it relatively well; I […]

8 Years Doing It For ME !

Invest In ME

    If you have been with us from the start then please congratulate yourself on your part in changing the landscape of research and future treatment of ME in UK and beyond! Also please accept our massive thanks for your ongoing support to help the charity Invest in ME Research achieve so much. If you are […]

Land Next To Cemetery Could Become Temporary Car Park

Fulford Roadworks

    By Chloe Laversuch in YorkMix.   Land next to Fulford Cemetery could be turned into a car park for construction vehicles while building work is carried out nearby. A planning application has been submitted for land off Fordlands Road to be used as a temporary car park until July 2020. A new care home is […]

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