Personal Stories

Accessibility And Disability: Changes I’d Like To See In 2021 And Beyond

accessibility

  From the Life Of A Blind Girl Blog. My first blog post of the new year would usually consist of me sharing some of my goals for the upcoming year.  like many others, I’m taking this year one step at a time; I’m not setting myself any strict goals, I’m focusing on myself and […]

Inspirational Holly Moscrop Whose Life Was “Knocked Off” Her Planned Path Finds A New Way To Follow Her Dreams Of Farming

News

  By Sophie McCandlish in The Yorkshire Post. Over the past five years Lincoln Red cows have become a feature at Stockheld Grange Farm in Scholes. The move to this particular breed which saw Roger Moscrop buy three heifers and then a further five within a week was inspired by his 24-year-old daughter Holly. Holly, who suffers […]

A Doctor With Long-Covid Finds Out The Downside Of Graded Exercise Therapy

Exercise

  By Jerome Burne for the Daily Mail.   As they’re told to exercise despite crippling fatigue, and advised they should banish ‘negative thoughts’…No wonder doctors think their long Covid treatment is misguided. Professor Brendan Delaney developed a mild case of Covid just before the first lockdown in March, suffering the now- familiar symptoms of a cough, […]

A Geneticist’s Quest To Understand His Son’s Mysterious Disease

Ron Davis

By Tracie White in The Scientist. Ronald Davis of Stanford University changed his focus to research on ME/CFS, the disease formerly known as chronic fatigue syndrome, in a bid to help his son and others like him.   About 10 years ago, Stanford University genomicist Ronald W. Davis began a new investigation into a mysterious […]

Campaigner’s Research Shows Rail Access Information Is Often ‘Wildly Inaccurate’

wheelchair

By John Pring in Disability News Service.   Information used by disabled passengers to check if a rail station is accessible is frequently “wildly inaccurate”, and often leads them to book travel to and from stations they cannot access, according to new research. The research by disabled campaigner and access expert Doug Paulley shows that the accuracy […]

#Walking From Home: The Wheelchair User

Wheelchair

    Caroline lives in a seaside town in England and is a member of one of our Local Groups of volunteers.  As a wheelchair user, Caroline is passionate about improving streets and the access to them for everyone. In normal times, Caroline’s favourite things are being with friends, volunteering and seeing the sea. Here she […]

The Enduring Light Of Love

Lost

From A Life Hidden Blog by Naomi Whittingham.   I see him in the hushed beauty of a winter sky; in the gold-streaked clouds of an expectant dawn.  I feel his presence in music and candlelight.  He is never fully here, yet with me always.  Unknown to much of the world, yet a constant in my […]

New ! ME/CFS Family Impact Survey By Dr Nina Muirhead & Cardiff University

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By Russell Fleming in The ME Association. We are excited to announce a new international research study looking at the impact of ME/CFS on the quality of life of both patients and their family members. This is a short and simple online survey designed to be accessible to all adults 18+, including severely affected patients. […]

How To Manage Long Covid-19 Symptoms And Fatigue

Fatigue

  By Megan E. Doherty in elemental. Covid-19 is new, but the ME/CFS community has dealt with long-haul-like symptoms for years. Here’s how they cope. Asthe pandemic has progressed, it has become clear that a good chunk of Covid-19 patients suffer symptoms for weeks, even months, after first getting sick. Many of them deal with fatigue, muscle and […]

Long Covid: Overlap Emerges With ME – Including Debate Over Treatment

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  By Linda Geddes in The Guardian. Six weeks after contracting Covid-19 in April, Dr Amy Small felt well enough to attempt a walk around Holyrood park in Edinburgh with her young family. Her kids wanted to climb Arthur’s Seat – the craggy hill at its centre. Thinking it would be OK if she walked slowly, […]

First In Our Superhero Series : The Whitney

Whitnet Dafoe

    Written by Di in Stanford Wood Studio.   Di has had a fascination with beautiful handmade items all her life and always had a yen to try making some herself, yet forever found herself putting it off. She got to the stage where she thought, if not now; when? And that’s how she […]

“Ice Cream & Hypothermia” Revisited + A Chilling NICE Consultation Process

Valerie Eliot-Smith

By Valerie Eliot Smith in Law and Health: due process and civil society.   Note: this post runs at 2270 words. It falls naturally into two sections of approximately the same length.  ************** The blog has been rather quiet for a while. While my day-to-day work does not stop, my ability to write blog posts is […]

Why Do We Need To highlight Disability History Month ?

disability-rights

  By Gem Turner in WheelAir.   At the time of posting this, it’s Disability History Month in the UK. It’s not very widely known – and when I talk about it, it gets a lot of questions from people. The main one is something like “it’s quite good for disabled people now though isn’t […]

Getting A Tooth Out With M.E. !

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By Bill Clayton. Just a little update on the tooth extraction. I’ve just been talking about this as ME means that I needed a general aesthetic due to not being able to deal with the lights, vibrations, and the whole construction team that would have to climb into my mouth at the same time ! […]

Important News From Jennifer Brea

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  From #MEAction.   Today we announce that #MEAction’s co-founder and executive director, Jennifer Brea, is going to be transitioning to a board position so she can take time to focus on her health after five intense years of ME and advocacy. This will not happen immediately- we will be working hard to find a […]

Susanna Clarke: ‘I Was Cut Off From The World, Bound In One Place By Illness’

Books

  By Justine Jordan in The Guardian.   Sixteen years ago, Susanna Clarke’s debut novel became a publishing phenomenon. Jonathan Strange & Mr Norrell is an unlikely story of intellectual obsession, set in a Regency England in which the buried powers of English magic are reawoken by two scholar magicians. The prose style mashes together Jane Austen […]

When Spaces Are Made Accessible For Disabled People, Everyone Benefits

Samantha Renke

  By Samantha Renke in the Metro.   I have a confession: I seem to have fallen out of love with London, something I never thought would (or even could) happen. Having moved to the Big Smoke almost nine years ago to follow my dreams and live independently, I imagined spending the rest of my adult […]

Trio Of MPs Expose Widespread Discrimination In House Of Commons

Parliament

  By John Pring in Disability News Service.   Three MPs – two of whom have long-term health conditions – have exposed the widespread discrimination faced by disabled MPs due to outdated House of Commons rules, both before and during the COVID-19 pandemic. More than 100 “very high risk” MPs are currently “excluded” from taking […]

‘I Very Quickly Went Downhill’: Casey Stoner Opens Up On Chronic Fatigue Syndrome Battle

OIP (7)

  By Marc Churches from Australian Motor Sports.   Australian MotoGP legend Casey Stoner has opened up on his health issues as he continues to battle with Chronic Fatigue Syndrome (ME/CFS). The two-time MotoGP World Champion revealed last year that he had been diagnosed with the debilitating illness, which impacts on sleep, causes profound fatigue […]

I’m An Angry Disabled Woman. Here’s What I Want You To Know About Inaccessibility

Disability Dice

  By Sylvia Colt-Lacayo in Huffpost.   Recently, I was in the grocery store, minding my own business, when I heard, “Daddy, what’s wrong with her legs?” I looked to the right and saw a young boy with a now-embarrassed father, who quickly shushed his son. The dad made eye contact with me, trying to relay […]

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