Blogs

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 […]

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 ?

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    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 […]

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 […]

Words From A Hidden World

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    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 […]

The Impact Of ME

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  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 […]

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 […]

“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 […]

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

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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 […]

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 […]

Potential Dangers Of Exercise Or Activity For ME And Chronic Fatigue Syndrome

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    From the How To Get On Blog.   We are taught that exercise is supposed to make us feel better. Staying active is supposed to make us healthier. Getting out of bed is supposed to improve our quality of life. Sadly, for people with Myalgic Encephalomyelitis or “Chronic Fatigue Syndrome,” the opposite can […]

An Apology To My Wheelchair

Wheelchair

    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 […]

Practical Solutions To Everyday Spoonie Problems

Spoonie

  By Jo Moss in A Journey Through The Fog.   Having a chronic illness means everyday tasks can be challenging, exhausting and painful. But there are steps we can take to make life easier, to limit the stress caused and to conserve our energy for more enjoyable activities. Here are some practical solutions to […]

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 Secret Of Change: Spend Your Energy Wisely With Chronic Illness

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    From A Chronic Voice.   Chronic illness is a monster consumer of energy, leaving little to spare. Why waste it on unnecessary thoughts and unchangeable circumstances? So I ask myself, “what can I do to make things better? Is there something I’d like to create for myself today? How can I become a […]

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

Lonely

      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 […]

Post Twenty Seven. No, I’m Not Tired.

ME

  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 […]

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 […]

9 Relatable Comics That Nail What It’s Like To Have Chronic Illness

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      By Michelle Levy in The Mighty.   Getting sick is no laughing matter, but it often takes humor to be able to get through the ups and downs of chronic illness. While some of these comics make us laugh out loud in pained affirmation, mostly they raise awareness of chronic illness, and […]

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