Personal Stories

The Struggle You Don’t Realize When You See Me Out And About

Frustration Chronic Illness

    By Lindsay Karp in The Mighty.   There is a lot you don’t realize when you see me out and about. You may think I’m fine when you see me at the playground pushing my son on the swing. You may think this is an ordinary day for me when you see me […]

Post Twenty One. The Wheelchair Has Arrived.

Wheelchair

  From puffins&penguins&me A personal blog about my experience of living with the illness Myalgic Encephalomyelitis (ME)   So, the much anticipated wheelchair has arrived! It was delivered mid-November by a very nice engineer who unpacked and put it together for me, and he gave me some basic instructions, how to use the joystick, how to […]

From York To The North Pole: Brothers Publish Magical Children’s Christmas Book

Christmas

  From YorkMix.   One day a few years back, a little wooden door appeared overnight in an old tree near York. That mysterious moment has now inspired a magical new children’s book, co-authored by a very familiar face in the city. In his day job as communications and evaluation manager at York Museums Trust, […]

“Unrest” Aims For Awards Season Recognition

Jen Unrest

  By The Independent Critic.   Before we go any further, I must confess to you that prior to watching Jennifer Brea’s Sundance Film Festival award-winning documentary Unrest that I was, in fact, one of “those” people. What do I mean by “those” people? I was one of those people referenced in the film who, like many […]

Myalgic Encephalomyelitis (ME) – Treatment Database

Database

  From The American Myalgic Encephalomyelitis and  Chronic Fatigue Syndrome Society.   Although it is routine for doctors to prescribe drugs to help alleviate the symptoms of ME/CFS, patients may respond in unpredictable ways. Specialists report that it is common for ME/CFS patients to have paradoxical responses. For example, an anti-anxiety drug may produce anxiety. […]

Claiming PIP And ESA: “Horrific And Inhumane”

benefits

  Author: Liam.Evans@turn2us.org.uk   The inquiry into Personal Independence Payment (PIP) and Employment and Support Allowance (ESA) has revealed testimonies of despair.   A Work and Pensions Committee inquiry into disability benefits has heard from more than 3,000 people despondent with the system. The inquiry into PIP and ESA has revealed countless experiences of severely disabled […]

The Man Behind The World’s Best Restaurant Wants To Open A Venue In York

Tommy Banks

  From YorkMix.   We’ve got more than our fair share of award-winning chefs in York these days. Neil Bentinck saw his Micklegate restaurant Skosh awarded a Bib Gourmand by the Michelin Guide in September. Le Cochon Aveugle on Walmgate, run by Josh Overington, was named as one the UK’s Top Scorers in Harden’s Best UK Restaurants 2017. And Andrew […]

Chronic Fatigue Syndrome (ME/CFS) Researcher And Patients Shine During NIH Call

Cort_Johnson

  By Cort Johnson in Health Rising.   It’s great the NIH is doing telebriefings a couple of times a year to inform the chronic fatigue syndrome (ME/CFS) community of their progress.  The calls can be more or less interesting. This one was definitely on the more interesting side. NIH Intramural Study Proceeding on Pace Nath […]

Support Myalgic Encephalomyelitis Research And Funding

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    By Lisa M. Alioto in SC Times.   Do you believe cancer exists? That heart attacks happen? Or that an aneurysm can kill you?  That Alzheimer’s really causes memory loss? Or that strokes can cause paralysis? Of course you do — they exist and they happen, sadly, every day. Do you know what else happens […]

My Promised Saline IV Update. How Did It Go ?

Anil

  By Anil van der Zee, from his Blog, Capture, Dance, Words.   This year I’ve arranged for saline IV’s. As I have a hard time tolerating any medication, and I’m not improving enough because of it. Saline IV’s seemed to be the best solution to help with my orthostatic intolerance or rather my postural […]

Is Prescribing Drugs ‘Off Label’ Bad Medicine ?

pills-main

  By Ravina Barrett in The Conversation.   A woman, let’s call her Sarah, is a young actor looking to make her debut at a major theatre. She is fit and healthy, but gets nervous on opening nights and can’t sleep. She’s tried zopiclone, but it didn’t work, so her GP prescribes a course of quetiapine. […]

Bus Travel And Wheelchair Users

wheelchair

    By Jonathan Webb in Disabled Travel Advice.   Bus travel can often cause problems for wheelchair users, but this is changing as more and more wheelchair accessible buses are introduced.Buses which carry more than 22 passengers are subject to the Public Service Accessibility Regulation 2000, which at a practical level means that all […]

A Glimpse Into What Fatigue Really Feels Like

Fatigue

By Mikala West in The Mighty.   This is the most difficult piece I have ever shared. I like to share things that are uplifting and inspiring, that have a happy ending. So, if you’re expecting that, I’m sorry to disappoint. This piece is about honesty, truth, and real life. Fatigue is a symptom that […]

What Acceptance Looks Like After My Chronic Fatigue Syndrome Relapsed

Lonely-man

  By Gemma Cresswell in The Mighty.   Years ago, I was able to confidently see the positive sides of how myalgic encephalomyelitis (ME) had affected my adolescence and made me the person I’d become. Yes, it had been tough, isolating and upsetting, but being seemingly on the other side of it, I could see how […]

Losing A Beloved Career To A Chronic Illness: Caroline’s ME/CFS Story

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  By Caroline Christian in Health Rising.   After 11 years of marinating in chronic illness, my ability to work has all but evaporated and I have entered the world of full time disability for the first time in my life. This time of year would normally mark a return to university life after the summer break. […]

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