Personal Stories

Why Are We So Quick To Judge ME/CFS Recovery Stories ?

Recovery

  From A Journey Through The Fog By Jo Moss.   As a community we are very good at supporting each other especially when one of our own is having a particularly bad time with their health. But one thing I’ve noticed, that I find disheartening, is that we don’t give people a safe platform […]

Parents And Children Missing From Their Lives Due To M.E.

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  From ME Action.   Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. Parents with ME are missing precious days and years with their children due to the disease, and parents of children with ME are fighting to provide care for their sick children in a world where there […]

Do You Have ICC-ME And Other FAQs

Jen Unrest

  By Jennifer Brea.   I just wanted to respond to a few comments and questions raised in response to recent posts in this series. If you aren’t a part of the ME community, be forewarned, much of the following will be hard to follow! The first set of questions all circle the same core question: do […]

Telford Cyclist Takes On Epic Race To Help Teen With ME

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    From The Shropshire Star.   A cyclist will take on a challenging 100-mile race through woodlands in support of a bed bound 16-year-old with chronic fatigue. Kind-hearted Arry West, who is 44, will get on his bike for the epic Mountain Mayhem challenge on June 22 and 23 in aid of research into […]

Living With Chronic Fatigue Syndrome

KT King

  By Janet Harrison in The Yorkshire Post.   Living with ME can be severely life-limiting for those affected. KT King, 46, from Hessle, explains what it is like living with myalgic encephalomyelitis, sometimes known as Chronic Fatigue Syndrome. “I first became aware of ME aged 23 when I spent six months in bed after […]

New Test Could Revolutionise Diagnosis Of Chronic Fatigue

Australia

  From 9News.   Aimee De Lurant’s battle with chronic fatigue syndrome often leaves her bed ridden, unable to concentrate or even move. The 25-year-old can’t work and has a limited social life as a result of the condition, which at its worst causes symptoms including excruciating pain and extreme exhaustion. “I can’t get out […]

The ‘Activity Hangover’ I Experience Because of Chronic Illness

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  By Heather Wallace in The Mighty.   As someone who has recently moved to a new town and is trying to figure things out and find my groove, I have been out a lot more than I usually am, and I am paying for it. Having fibromyalgia means things are different for me now. Planning on going […]

21 People Describe What Sensory Overload Feels Like

Sensory

  By Melissa McGlensey in The Mighty.   Sensory overload happens when too much sensory stimulus is occurring at once — it can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting — or a hundred other things. It’s often associated with certain diagnoses like autism, sensory processing disorder, chronic fatigue syndrome, fibromyalgia, post-traumatic […]

Struggling To Accept The Days When Illness Keeps Me From Doing Anything

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  By Sally Doherty in The Mighty. I’ve had some of those awful days recently (they happen now and then, and more often than I’d like). You know the type: days when instead of your bed being somewhere that you go to rest, your bed becomes a prison that you can barely get out of. […]

Thank You + More To Come

Jennifer Brea

    By Jennifer Brea.   On Monday, I shared that after three neurosurgeries, my ME is in remission. I have to admit , it was scared to “come out” about my improvements. I wasn’t sure what the reaction would be. Skepticism? Grief? Anger? My own feelings about my remission are complex. And I don’t know how […]

This Chronic Syndrome Affects Mainly Women & Is Really Hard To Diagnose

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By Katy Fallon in Refinery 29.   When I was a teenager, my mother fell ill with M.E. and I saw her struggle to get her symptoms recognised – even though she was a doctor herself. Myalgic encephalomyelitis (M.E.) is a chronic condition which affects 250,000 people in the UK and around 17 million people […]

Falkirk Girl Shares ME Experience On 16th Birthday

Lonely

    By Charlene Wilson in The Falkirk Herald.   A Falkirk ME patient who claims she was labelled a ‘lazy teenager’ by her GP has chosen to celebrate her 16th birthday by raising awareness about her condition. Hannah Sweeney was diagnosed with Myalgic Encephalomyelitis, more commonly known as ME, when she was just 14. […]

Louisa’s Fight For NDIS Chronic Fatigue Syndrome Support

Australia

    By Dixie Sulda in The Advertiser.   Louisa Stocco is almost too exhausted to fight her own battle. The 21 year old was diagnosed with Chronic Fatigue Syndrome (CFS) three years ago, after she collapsed from exhaustion while touring with a performing arts company. Since then, her physical and mental fatigue has stopped […]

Mattie’s CCI Journey – After 3 Years With ME

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  From Mechanical Basis.   An interview between Jeff and Mattie who has undergone a CCI Fusion operation in the hope of reversing ME.   Mattie is a 47 year old web developer. He lives in a small town in the Netherlands with his wife, his 17 year old son, and their two golden retrievers. Mattie […]

My Favourite Chronically Ill Entrepreneurs

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    By Pippa in her Life Of Pippa blog.   I once saw a quote reading “when you buy from a small business, an actual person does a little happy dance”, and it really stuck with me. I absolutely love the sentiment of supporting independent creators, all the more so when I know they’re […]

Health Update #3: My ME Is In Remission

Jennifer Brea

  By Jen Brea. This is a hard post to write because there are no words that can do this justice. I can hardly believe it myself. My ME is in remission. For the first few years that I was ill, I dreamt of being able to say this. I fantasized about what recovery would […]

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

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    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 […]

We Cannot Continue To Let Doctors ‘Gaslight’ Chronic Illness Patients

Gaslighting

    By Siobhan Simper in The Mighty.   Author’s warning: This post contains experiences of gaslighting and abuse. Recently, I saw an all-too-common meme on social media: the inspirational disabled person. The image was of a Paralympic horse rider, with the caption, “no excuses.” Much has been written about the problematic nature of disability “inspiration porn.” What shocked me was when I […]

Opera And Disability

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  Q&A with Jacqueline Ko.   May 12th is the International Awareness Day for chronic neuroimmune diseases. To shine a light on these extremely prevalent yet little-known conditions, I caught up with performer, producer and disability advocate Jacqueline Ko, an award-winning Canadian soprano and co-founder of Opera Mariposa who has lived with the neuroimmune disease […]

He Pioneered Technology That Fueled The Human Genome Project. Now His Greatest Challenge Is Curing His Own Son

Ron Davis

    By Ryan Prior CNN.   (CNN)Multiple times a day, every day, Ron Davis sits with his head bowed, waiting outside his son’s bedroom for a subtle signal that it’s all right to come in. He opens the door to the space where Whitney has spent most of the last decade. Whitney lies motionless […]

Saving Money On Theatre Tickets As A Disabled Young Adult [AD]

Pippa

  By Pippa, in Life Of Pippa.   This post and associated social media posts are kindly sponsored by Triple 7 Events. Find out more about them and book some bargains on their website here [AD]. Let’s be honest: being a theatregoer certainly isn’t the most affordable hobby in the world, particularly as a disabled young person. Whilst […]

19 Things People With ME/CFS Wish Others Understood

Lonely

      By Paige Wyant in The Mighty.   Have you ever told someone about your ME/CFS, only for them to respond, “I understand, I’m always tired, too”? Though friends and loved ones may be well-intentioned, it can be frustrating and hurtful when they just don’t “get it.” The reality is that ME/CFS is […]

Understanding ME And Chronic Fatigue Syndrome In Children

Children

  By Claire Tripp in teachwire.   Longterm and little-understood illnesses like ME, or chronic fatigue syndrome, can leave pupils misdiagnosed, isolated and forgotten, so it pays to spot the signs, says Claire Tripp…   You leave work with “Miss! Miss!” still echoing in your ears, an armful of marking, and thinking of Ellie. Once […]

‘Hard To Cope’ Mum-Of-Two With Chronic Fatigue Says Condition Is Triggered By Her Noisy Kids

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  By John Siddle and Gemma Mullin, Digital Health Reporter in The Sun.   Katy Beardsworth has ME and has to lie down in a dark room when her kids start being loud. Katy Beardsworth, 38, has ME – a cruel illness which presents as unrelenting exhaustion and profound pain. The deeply misunderstood neurological condition […]

You Don’t Look Sick: ‘People Say ME Isn’t Real But Trust Me – I Deal With It Everyday’

Lost

    By Laura Abernethy in The Metro.   Over 13.9 million people living in the UK are disabled, but many people live with conditions that you can’t always see. They struggle with symptoms every day but when you see them in the street, you would have no idea that anything is wrong. You Don’t […]

7 Things All Chronically Ill Dancers Can Relate To

Pippa

  From Life Of Pippa.   Since being diagnosed with my long-term condition, I’ve realised that there’s a huge correlation between professional dance and chronic illness. For me, it was ballet. I trained intensively all throughout my childhood and early teens and was lucky to enjoy some ultimate highs and accomplishments, until (in a nutshell) […]

Interview Part 1 – What Does ME Feel Like ?

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  From Find Millions Missing.   Esme and Millie learned over the years how to cope with ME. Esme (21) is a medical student who was diagnosed with ME when she was in school. Millie (23) was diagnosed with 17, right before her final school exams before she headed off to University in England. Both […]

M.E. – Just Cut And Paste…..

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  M.E. – JUST CUT AND PASTE…..   Hair’s a mess, can’t get dressed Can I shower, that’s the test Done ok, the shoes are on Now where the hell’s my energy gone? Another day has been a waste Another day just cut and paste.   Can’t get the hang of doing nowt Want to […]

8 Common Myths About ME/CFS Debunked

myths

  By Jo Moss in A Journey Through The Fog.   For ME Awareness month I want to tackle some of the common misconceptions surrounding this debilitating illness. The lack of belief and ignorance surrounding ME is deep-rooted and causes significant harm to patients worldwide. Due to the disbelief, misconceptions, and stigma that are attached […]

‘My Daughter, 21, Who Died Weighing Five-And-A-Half Stone, Had ME On Her Death Certificate – Yet Some Still Say It’s Not Real’

Merryn Crofts

    By Claudia Tanner, in iNews.   The mother of Merryn Crofts believes attitudes about the disease haven’t changed since her daughter’s death two years ago. Clare Norton struggles to talk about the day her “beautiful” and “energetic” daughter took her last breaths just days after her 21st birthday. As a mother, she’d felt helpless […]

Social Services Can Threaten Families Of Children With Chronic Fatigue

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  By Natasha Wynarczyk Myalgic encephalomyelitis, or ME, is little understood by the general public. That lands some parents in the firing line.   Angus Rodwell was an energetic, playful child from Suffolk, UK. Then, at the age of eight, he fell ill with a series of viral infections. Five years on, the 14-year-old is now […]

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