myalgic encephalomyelitis

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 […]

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 […]

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 […]

No One Prepares You For The Grief Of Chronic Fatigue Syndrome

Lonely

    By Asa Lovell  in The Mighty.   No one prepares you for the grief and feelings of inadequacy you get when you have chronic illnesses. They make such a huge impact on your life that they derail you, stop you from achieving the things you’re working for in the time you’d planned. You […]

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 […]

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 […]

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 […]

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 […]

#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 […]

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 […]

My Invisible Illness Just Became Visible And Here’s Why

Lisa

    By Lisa Alioto in Realistic Optimism.   I have an invisible illness, meaning you cannot see it, but it’s oh, so present for me every minute of my life. I’m constantly exhausted, in pain, have a variety of cognitive deficits, vision loss, light, sound, and temperature sensitivities, a weakened immune system, and many, many […]

Preparing For University When You Have A Disability

University

  By Chloe Tear.   Oh how I remember this time well! I actually graduated on Wednesday, but preparing for the whole thing only seems like yesterday. University was such an unknown step, even if it was a step I knew I wanted to take. My health at the time was far from ideal and […]

Glimpsing The World: My Joy And Pain

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    By Naomi Whittingham in A Life Hidden.   There is an indescribable joy in experiencing the outside world after many months or years of incarceration.  The dance of sunlight through the leaves of trees; the flicker of shadows on grass; the touch of a gentle breeze.  When darkness and isolation have been the foundation of […]

Post Thirty Four. Planning For A Future With Severe ME.

Caminage

  By Pheobe Boag in Puffins, Penguins and Me.   It’s been a good few months since my last post, and you’ll soon find out why, I’ve had a lot going on. With so much happening, my limited brain function has had to be directed elsewhere, and my poor wee blog has been neglected as […]

Straight Talk From Carol Head As She Steps Down From Solve ME

Carol Head

  By Cort Johnson in Health Rising.   ME/CFS Rears Its Head Again A commitment to social justice runs in Carol Head’s blood. She founded a non-profit which has given away millions to support entrepreneurs who work on global poverty, and was a founding board member of another non-profit that tells the stories of marginalized women’s lives. Her work […]

RACGP’s 2015 Guidelines On Graded Exercise Therapy Published In A UK Medical Journal

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  By Laura Beere in Emerge Australia.   Apologies for all the acronyms and brackets in the post below. We’ve tried to make this as clear as possible so that we can keep you informed about a (sadly this time – negative) development that could impact on the treatment and welfare of people with ME/CFS. […]

Care for Someone With Severe Myalgic Encephalomyelitis

Severe ME

By Greg Crowhurst in ME Support.   Linda, my wife, collapsed over two decades ago and very quickly became bed bound. In the months leading up to her collapse, she had had several operations and a long chest infection. For almost two years prior to that she was in constant pain, experiencing severe pins and […]

The Emerge Australia Media And Research Digest (028) 26th July 2019

Australia

  Welcome to the Twenty-Eighth Emerge Australia Media and Research Digest! The fortnightly summary of research and media about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) If you’d like the Digest to drop directly into your inbox every fortnight you can sign up for the Digest here. (This will ONLY sign you up for the Digest – this […]

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