Personal Stories

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

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  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

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    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 ?

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  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’

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  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

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  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

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  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

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  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 […]

I Have A Chronic Illness. I Know What The COVID-19 Long-Haulers Are Going Through

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Nadine Sander-Green in The Globe and Mail. By the time I reached my early thirties, I had climbed one of the world’s highest volcanoes in Ecuador, won an arm-wrestling contest in Dawson City and trekked through the Himalayas for a month straight. All I had to do was ask my body to do something, and […]

City Of York Council Ban Blue Badge Holders From City Centre

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  There are approximately 49,058 cities, towns and villages in the UK. The disabled spend is around £212 billion per year. I wonder how many of these places have banned Blue Badge holders from their centres stopping them spending some of that money with struggling retailers? York has..

Councils Face Calls To Re-Think COVID Streetscape Changes

Disability Parking

  By TJM in Disability News Service.   Local authorities in England and Wales are facing calls to re-think the “streetscape” changes being made in response to COVID-19, amid concerns that the new street infrastructure is making parts of towns and cities inaccessible to many disabled people. Disabled people and their organisations have previously warned that many […]

Doctors With Long COVID

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  From BMA. Doctors who contracted COVID, and thought the symptoms would be over in weeks, tell Jennifer Trueland about their continuing pain, exhaustion and – sometimes – struggle to be believed. Richard Campbell had a demanding job as a consultant rheumatologist in a busy London trust at the start of the year. In his […]

ME & Education – Sian’s Story

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  From Physios for M.E. We’re delighted to present another young person’s story about how they are managing education alongside ME. Sian is 15 years old and has written this for us – thank you so much Sian! “One of the most important things I found I could do for myself, in terms of pacing […]

Celebrating Whitney Dafoe And His “Awakening” On His 37th Birthday

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By Cort Johnson in Health Rising.   It’s Whitney Dafoe’s 37th birthday. He’s had chronic fatigue syndrome (ME/CFS) since 2004 and has been severely ill since about 2012. Fed by feeding tubes, eyes and ears covered, too weak to move, unable to speak or tolerate almost any stimuli. Whitney has hovered in a kind of […]

Covid 19 Coronavirus: Kiwi Expert On Covid Survivors Affected By ME

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  By: John Gibb in the Otago Daily Times.   In a cruel twist, many Covid-19 survivors could be affected by a once-obscure chronic fatigue condition, initially termed the Tapanui flu, and whose existence was once ridiculed and denied. Emeritus Prof Warren Tate, 73, of the University of Otago biochemistry department, officially retired recently but is continuing […]

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