Personal Stories

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 […]

“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 […]

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 […]

Hundreds Of Families To Benefit From Claudia’s Law, Which Comes Into Force Today

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  From YorkMix.   A new law named after Claudia Lawrence is expected to help hundreds of families, allowing them to take control of their missing loved ones’ financial affairs. Named after chef Claudia, who vanished without a trace after leaving her York home a decade ago, Claudia’s Law came into force today Wednesday. Police […]

Preparing For University When You Have A Disability

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  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 […]

How To Book Access Theatre Tickets – Seats For Disabled Patrons

Life of Pippa

    From the Life of Pippa Blog.   Ever since I started theatre blogging and my chronic illness-friendly reviews, I’ve had messages asking about how I book my access tickets and ensure my needs are met. It’s one of those things that I’ve been doing for so long now that it’s become second nature, so […]

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.

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  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

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  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 […]

Care for Someone With Severe Myalgic Encephalomyelitis

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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 […]

Disability Comes With An Extortionate And Shocking Price Tag

Samantha Renke

  By Samantha Renke in the Metro.   Do you ever get the feeling you’re being ripped off? Paying over the odds is something every disabled person encounters. Time and time again, we are faced with eye-watering prices for ‘basic’ products and equipment that are labelled as ‘disability’ or ‘specialist’ but have a price tag that is […]

Rambles With Remus

Euan's Guide

    From Euan’s Guide.   Welcome to the first in a series of regular guest blogs by Zoe, a Euan’s Guide Ambassador, and her assistance dog Remus. The two live in Farlie on Scotland’s West Coast and the blog will focus on Zoe’s adventures using an all terrain mobility scooter. Part 1: A New […]

Confessions Of A Chronic Fatigue Skeptic

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    By Shell Pettifer in The Mighty.   “Chronic fatigue, my arse!” I have a confession to make. I have oftentimes throughout my life internally judged people for being overly dramatic. There, I’ve said it. I am a closet censure. I am guilty of internal eye rolls, doubtful compassion and quite frankly some completely uneducated […]

What I Hear When You Tell Me ‘But You Look Fine’

Frustration Chronic Illness

  By Melanie Leong  in The Mighty.   Fairly recently, I had this weird experience where a person with a chronic illness threw the “but you look fine!” line on me. I am pretty certain I didn’t respond. In fact, I don’t really recall what happened afterwards because I was in shock. Isn’t it chronic illness code that we […]

An Apology To My Wheelchair

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    From the Creamcrackered.me Blog, dated 11 March 2019.   Around two weeks ago it was International Wheelchair Day and this got me thinking about my relationship with my own wheelchair and the journey we’ve been on together. So, I decided to write a little something about my new identity as part-time (ambulatory if […]

Please Stop Trying To ‘Fix’ My ME/CFS

Mighty

  By Simone DM in The Mighty.   When you become ill, all you want is for others to be compassionate and understanding. Yet when you come down with something like ME (myalgic encephalomyelitis), that not even your doctor comprehends, it’s a different story. Others are quick to pass judgement, believing you are somehow causing your […]

But Make It Accessible: Wax Poetic Clothing

Natasha Lipman

  By Natasha Lipman.   Hello and welcome to my new blog series “But Make It Accessible”, where I speak to brands that are working to create beautiful and stylish clothes that are also accessible. Rediscovering my love for fashion since becoming a wheelchair user has brought a lot of joy into my life, but […]

Onset: Part III (Connections)

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  By Jennifer Brea.   I’ve previously written about how a bad mold exposure and my acute, viral onset of myalgic encephalomyelitis (ME) could have directly and indirectly damaged my connective tissue, including the ligaments in my neck, causing craniocervical instability (CCI). A key mediator of that damage might have been mast cell activation and collagen-degrading enzymes. The coup de grâce (and it really was, oddly, […]

Chronic Fatigue Syndrome (ME/CFS) Article Rocks Top Medical Journal

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    By Cort Johnson in Health Rising.   It took Tony Komaroff over thirty years to get this done but it may have been worth it. Komaroff, Harvard doctor, researcher and ME/CFS advocate, has been studying, writing about and advocating for ME/CFS research since at least 1987 when he was the senior author on […]

Stress, PTSD And Parents Of Kids With Disabilities

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    By Dr. Liz Matheis  in The Mighty.   As a Psychologist, I am in the business of receiving phone calls from parents worried about their kids with disabilities. During that initial phone call, parents give me a quick run-down of their child’s symptoms, the struggles the family at large is facing, and the specific goals […]

The Challenge Of Explaining How I Feel As Someone With CFS/ME

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      By Emma England in The Mighty.   One of the most frustrating things about living with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) is that most of the time, I don’t “look” ill, and so people may not understand the fact that there’s anything wrong with me. CFS/ME falls into the category described as […]

20 ‘Comebacks’ To Use When A Doctor Isn’t Taking You Seriously

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  By Erin Migdol in The Mighty.   When you have an illness that is invisible, complex and/or difficult to treat, that sometimes translates into challenging experiences with doctors. While there are many kind, compassionate doctors out there who are willing to put in the time to figure out your health issues, unfortunately many in […]

Disabled People Are Sharing The Worst ‘Compliments’ They’ve Received

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  By Serena Coady in The Metro.   Ever felt the sting of a backhanded compliment? Perhaps you’ve been told that your English is ‘surprisingly’ good, or that you’re funny… ‘for a woman’. A new Twitter hashtag, #DisabledCompliments, is highlighting that veiled insults are sometimes a daily reality for people with a disability. The viral […]

Post Twenty Seven. No, I’m Not Tired.

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  From the puffins&penguins&me blog.   The ME Association was recently asked by the media to compile a piece describing the difference between having ME and just feeling tired all the time. Given the frustratingly common misconception that ME is ‘feeling tired’, this of course resulted in a lively discussion on their Facebook page, and it prompted […]

My ME Puzzle

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    MY ME PUZZLE From our early days as we grow We learn and add to what we know Each piece of knowledge builds a picture To help us make our living richer We find the people who fit right in Our family, friends, our kith, our kin We find beliefs, our way, our […]

One North-West Town Is Getting It Right For Disabled People On Public Transport – So Why Can’t The Rest Of Britain ?

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  By James Moore in The Independent.   When you’re disabled the phrase “back to earth with a bump” is all too familiar. On Thursday I wrote about what I’d describe as a rare win: the Greater London Authority sent a motion to London mayor Sadiq Khan following my humiliating experience on the tube (I was […]

Chronic Illness & Boredom – The Real Groundhog Day

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    By Jo Moss in A Journey Through The Fog.   Each month a fellow blogger (A Chronic Voice) hosts a ‘Link-up party’. It is a monthly get-together for anyone with a chronic illness. An opportunity to share, to listen, and to learn from one another. It’s a great way to provide insight into life […]

Disabled People Already Fight Battles Every Day. Making Us Prove We Need Benefits Is Almost Inhumane

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  By Samantha Renke in The Metro.   Living with a disability in the UK today means living in a state of perpetual fear, feeling unheard, patronised and at times like a burden – and it can take a huge toll on your mental health. I was born with a genetic condition called Osteogenesis Impefecta […]

My Label And Me: I Am Not A ‘Scrounger’ Because I Claim Benefits

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      By Nina Grant in The Metro.   At 18, after six months in a psychiatric unit, I first claimed disability benefits. A social worker helped me apply for supported housing, as well as for the benefits needed to cover my rent and cost of living. Because I was so young, I didn’t […]

My ME And Me: ‘I Don’t Remember What It’s Like To Not Be Ill’

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      By Hannah  Price in BBC News.   It’s hard not to feel suffocated by the stale air and sterile, white ceilings of a hospital ward. The incessant beeping and patient grumbling provides a constant, miserable soundtrack as you wish you were literally anywhere else. When I was admitted to hospital in February, […]

Severe ME: I Had To Fight The People Supposed To Help Me

Me Australia

      by Sam* in ME Australia.  Sam (*not her real name) is a teenager living in Australia’s largest city without access to treatment to help her. Sam was prescribed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) repeatedly. After doing GET, Sam became housebound. Sam now has very severe ME and says […]

Accessible Transport From Disneyland Paris To Paris Gare Du Nord

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  By Pippa  in her Life of Pippa Blog.   Whilst this may be a bit of a niche post, I wanted to share my eventful first experience of public transport abroad as a wheelchair user, travelling from Disneyland Paris to Paris Gare Du Nord. It was a lack of clear information online that prompted […]

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