Personal Stories

Talk To Me ….But Slowly

Talking

  TALK TO ME….BUT SLOWLY   I used to love the banter Noisy bar room chat Then when the beastly ME hit It put a stop to that   Noise is now my Kryptonite My Achilles’ heel is sound It’s not by choice That the tone of a voice Can knock me to the ground […]

Disabled TV Presenter Abandoned For 45 Minutes On British Airways Flight Forced To Slide Headsets Down Aisles To Get Cabin Crew’s Attention

Disability

  By Sophie Morgan in The Independent.   Television presenter Sophie Morgan is calling on airlines to offer concessions for disabled travellers after she was left without means of moving “short of dragging herself along the floor” on a British Airways flight. Ms Morgan, who was paralysed in a car crash when she was 18 and uses a wheelchair, […]

How Online Actions Make The Real World More Accessible

Euan's Guide

  Written by Euan MacDonald MBE, Co-founder, Euan’s Guide.   Everyone knows that technology is making our lives easier – from the mobile phones in our pockets, the handy birthday reminders from a certain social network, to the lifesaving data records held by hospitals. However, something that might not be so obvious to businesses is […]

Disney Made Me Question My Disability

Life of Pippa

  From the Life Of Pippa Blog.   This piece was originally written for Scope’s online community, but I never got around to sharing it on my blog. It was this time last year that we were in Disneyland Paris living our very best lives, so here’s something of a throwback… Something I often consider is […]

The Crash That Follows The Push Of ME/CFS And FM Awareness Day

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  By Jodie Smith in Phoenix Rising.   It’s been about a month since the ME/CFS community pulled out all the stops for our May 12 International ME/CFS and FM Awareness Day. I think we have a great deal to be proud of, and encouraged by. With each passing year this bunch of chronically ill […]

When Illness Makes You Give Up The Commitments And Activities You Love

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  By Lexie in The Mighty.   I just made one of the hardest decisions I’ve ever had to make. Many of you can relate to my story. I’ve seen countless doctors, integrative general practitioners, naturopaths, chiropractors, and specialists over the last few years. When they couldn’t explain my symptoms, they diagnosed me with chronic […]

When People Judge Me For Not Working Because Of My Chronic Pain

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  By Lauren in The Mighty.   A “friend” recently said to me, “I may have a guy for you.” She knows I’m single and have been looking for someone special for a while now. We spoke over the phone and she asked, “What do you do? What do you keep busy with? I just […]

Running On Empty – Do Not Pass “Go”

Empty

  By Sam in the My Medical Musings Blog.     We all have moments in life when we hit a brick wall physically and perhaps mentally. It happens to the healthy and chronically ill alike. I remember in my “healthier” life, I’d get to the end of my working week and I’d be exhausted. […]

As I Age With ME

ME

  By Marianne Granger in #MEAction. In my forties I was moving forward fulfilling my drive to be a community organiser/communicator/coach (my day job) and also a screenwriter (a remnant of my earlier training and work as a stage actor). Being there for my grown children and reveling in the bliss of holding my grandchildren […]

The Best Thing I’ve Ever Done: Film Maker With ME Wants To Raise Awareness Of Hidden Illness

Film

  By Lucas Hill-Paul in SW Londoner.   A Herne Hill filmmaker hopes his short film This is ME will bring awareness to those living with a common invisible disability. Josh Pickup, 29, was diagnosed with myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome, at the age of 21. ME is among the most […]

Why I Think ‘Chronic Fatigue Syndrome’ Is The Worst Name Ever

Fatigue

    By Adele Paul in The Mighty.   Imagine the following conversation… Friend: Heard you weren’t feeling well lately? Me: You could say that. Friend: So you’re just tired all the time? Me: Yeah, and a few other things… Friend: Girl, I hear ya. When I got back from Hawaii in January, it took me […]

Caring For A Son With M.E.

Reflection

  From  Health and Social Care Alliance Scotland.   “My son is too ill to fight his cause but, as his mother, I will give it everything I’ve got” “Do they think it’s all in my head, Mum?”, my son quietly asked me as we left the GP surgery. “I can assure you, son, none of […]

Fit And Active Cardiff Woman Left Bedbound After Developing ME

Darkness

  From ITV News.   For the past year, 28-year-old Natalie Price has been living in darkness and silence. In 2014, she was diagnosed with myalgic encephalomyelitis, commonly known as ME or chronic fatigue syndrome. Sufferers complain of symptoms including extreme tiredness and fatigue, constant pain, extreme headaches and sensitivity to light and sounds. Since […]

A Mother’s Story: Alem Matthees

Me Australia

  by Helen Donovan in ME Australia.   May 12 is Alem Matthee’s birthday. Around the world, people with ME, their friends, families and scientists are grateful for Alem’s work in getting trial data released, showing that graded exercise therapy and cognitive behavioural therapy did not improve health the way the study’s authors claimed. In […]

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.

Children

  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

Cycling

    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 […]

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