Disability

Fatigue And ME

Fatigue

Fatigue And ME I have a worry on my mind That spins my head around It causes grief, it’s beyond belief And an answer must be found It’s about a word that’s used a lot A word filled with intrigue Not beat, not weary, not tired or wired But that bleedin’ word fatigue ! It’s […]

Using A Service: Reasonable Adjustments For Disabled People

Disability

  From the Equality and Human Rights Commission.   Equality law recognises that bringing about equality for disabled people may mean changing the way in which services are delivered, providing extra equipment and/or the removal of physical barriers. This is the ‘duty to make reasonable adjustments’. A duty is something someone must do, in this […]

Ending The Somatization Myth In ME/CFS (Or “Who’s The Deluded One Now” ?)

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By Cort Johnson in Health Rising.   Ronald Reagan said to Gorbachev, “Take down that wall!” and it did ultimately fall.  The ME/CFS version of that might be, “Get rid of those stubborn psychiatric ideas!” It’s a cultural problem.  The authors pointed out that anytime a physician sees a patient with unexplained fatigue, their default […]

New Pathways: A Step Towards Fine-Tuning Treatments For ME/CFS ?

Research

    By Cort Johnson in Simmaron Research.   Most chronic fatigue syndrome (ME/CFS) studies focus on females, but for once we have a study contrasting females and males. It makes sense that this group – hailing from Dr. Klimas’s Institute for Neuroimmune Studies, the University of Miami, the Veterans Center in Miami, the University […]

ME Association Guidance: Coronavirus And ME/CFS By Dr Charles Shepherd | 24 March 2020

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  From The ME Association.   Latest UK Govt. Guidance 24 March 2020: Last night, the UK Prime Minister launched sweeping restrictions that will impact on everyone. The announcement was the most stringent set of measures ever introduced in this country to prevent people leaving their homes – except for very good reasons. The only […]

Eight Reasons People With Chronic Fatigue Syndrome (ME/CFS) And/Or Fibromyalgia Should Take Care

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  By Cort Johnson in Health Rising.   Please note, if it’s not obvious, that I’m not a doctor – I’m a patient. Take these musings as you will. We don’t know if people with ME/CFS or FM are more at risk of: a) getting COVID-19; or b) coming down with a severe case of […]

Using A Service: Reasonable Adjustments For Disabled People

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From the Equality and Human Rights Commission.   Equality law recognises that bringing about equality for disabled people may mean changing the way in which services are delivered, providing extra equipment and/or the removal of physical barriers. This is the ‘duty to make reasonable adjustments’. A duty is something someone must do, in this case […]

16 Things People Don’t Realize You’re Doing Because Your Pain Is Constant

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  By Veronica Vivona in The Mighty.   Living with constant pain can be extremely frustrating. When you don’t feel comfortable, you might develop some habits designed to make things more manageable. You might have back pain that makes it hard to sit in certain chairs. You could potentially have widespread pain that makes it difficult to […]

Do You Ever Feel Like Giving Up ?

Lost

    By Jo Moss in A Journey Through The Fog.   Do you ever feel like giving up? Do you ever feel like you don’t have the strength to keep going? Do you ever feel like screaming; “I didn’t sign up for this”? Do you ever feel like the world is against you? Do […]

Bus Pass Restrictions Relaxed In North Yorkshire

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  By Karen Lie in Yorkshire Coast Radio.   Restrictions on the use of bus passes in North Yorkshire have been relaxed to help pass holders to take advantage of early morning shopping opportunities and medical appointments. North Yorkshire County Council have temporarily enhanced their National Concessionary Travel Scheme to enable pass holders to use […]

Does Britain Have A Transport Accessibility Problem ?

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  By BY BONNIE EVIE GIFFORD in Happiful.   Accessing public transport should be simple, shouldn’t it? Yet thousands face delays, inequalities in access, a lack of support and understanding. Enough is enough Whether we’re talking about your daily commute or venturing further afield, it’s hard to deny: travel can be stressful at the best of times. Overcrowding, […]

When You Say Coronavirus Will Only Kill The Vulnerable, You’re Talking About Me

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  BY BROOKE VITTIMBERG in Fast Company.  When news of COVID-19 started to spread, there were two popular responses. The first was to rush to the store, buying N95 masks and hand sanitizer until shelves were bare. The second was to shrug and comfort the masses because mostly immunocompromised people—people like me—would die. On Twitter, […]

Community Support Groups Spring Up In York To Help People Affected During The Coronavirus Outbreak

Support

    From YorkMix.   Community spirit is alive and well in York in the time of Covid-19. Groups are being set up to help fellow residents affected by coranavirus. There is now a York Covid-19 Mutual Aid group, with the aim of supporting vulnerable people in the city through the outbreak. George Turner explained more on the […]

Physio’s For M.E.

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Who we are We are a group of physiotherapists based in the UK who have recognised the issues of physiotherapy for people with ME. ​ Our aims are: – to educate and inform physiotherapists about ME and appropriate management strategies ​ – to support people with ME to feel confident in seeking physiotherapy treatment ​ […]

Protecting Yourself From Coronavirus Is Proving Harder For Disabled People Like Me

Disability

  By Chloe Tear in Huffpost.   It feels like every headline you read now is about coronavirus. With the virus causing concern and costing lives worldwide, it isn’t surprising. But it’s important that we talk about what that concern looks like if you’re disabled. We already know those with pre-existing conditions, like me, are more […]

ME Awareness – Lightning Up Clifford’s Tower In Blue

Clifford's Tower 10 May

  Just to let you know that City of York Council has agreed to light up Clifford’s Tower in York in blue over the period 11 to 17 May to help raise awareness of Myalgic Encephalomyelitis (ME).   This is part of a worldwide campaign where buildings in towns and cities across the globe will […]

ME Association Guidance: Coronavirus (covid-19) Update | 09 March 2020

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  By Dr Charles Shepherd, Hon. Medical Adviser, ME Association. The ME Association information and guidance about the coronavirus that was originally issued in early February and updated again last week, will continue being updated and issued on a weekly basis. This is to take account of the rapidly changing situation here in the UK […]

Inside I’m Dancing

Dancing in the Rain

By Chloe Leanne Brooks in M.E. Support.   I used to live by the motto “Don’t wait for the storm to pass, learn to dance in the rain” – but unfortunately, in my life this is no longer the case. My life is stormy. I can’t dance through this pain and heartache any more because my body […]

I Want To Work Out But Most Gyms Don’t Cater For People Like Me

Samantha Renke

By Samantha Renke in the Metro.   I remember sitting in the cafeteria of my first ever job in London. I’d moved down from a quintessentially Northern, rural town to pursue the bright lights and see what the capital had to offer. As I sat nibbling on my peanut butter sandwich, I asked the lady opposite […]

My M.E. MOT

Doctor

    My M.E. MOT   Woke up today It’s not gone away This beast, it’s here for good Thought maybe a dream But a nightmare it seems I’d sleep through it all if I could.   As another day dawns There’s something more going on The pain’s a bit harder to stand It’s tougher […]

M.E Myths Debunked: Part 1

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  By Lorna McFindlow in the Cream Crakered Blog.   Two years ago, when I was diagnosed with M.E, I knew a little about it because a friend of mine had it, but other than that I was clueless. From what I was told at the time of my diagnosis, I understood that I was […]

What It’s Like Living With Chronic Pain In Your Twenties

Chronic Pain

  By Kate Harveston in Thought Catalog.   I’ve always looked at posters showing the impact of cigarette smoking on the inside of the lungs and thought that if I could figure out a way to illustrate how I feel on the inside when I look fine on the outside, the image likely would turn […]

To Sleep At Last: A Good-bye To Darden Burns

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  By Cort Johnson in Health Rising.   “It comes down to the simple fact that I do not have enough energy to sustain my recovery. I am not sure that everyone in the CFS is like me, maybe I’m an outlier or just have a unique presentation of the condition. In any case I […]

Who Is Getting Sick, And How Sick ? A Breakdown Of Coronavirus Risk By Demographic Factors

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  By Sharon Begly in Stat News.   The new coronavirus is not an equal-opportunity killer: Being elderly and having other illnesses, for instance, greatly increases the risk of dying from the disease the virus causes, Covid-19. It’s also possible being male could put you at increased risk. For both medical and public health reasons, researchers want […]

Eating Meat: Links To Chronic Disease Might Be Related To Amino Acids – New Findings

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    By Laura Brown and Kelly Jones in The Conversation.   Plant-based diets have been popular in the media recently, but research shows that going vegetarian or vegan isn’t only good for the environment, but for our health, too. Meat-rich diets are linked to a range of health problems, from heart disease and strokes to type two diabetes and some cancers. […]

Coming To Terms With Sleep Disturbance

Sleep

  By Pippa Stacey in CareCo Mobility News. With March being National Bed Month, I thought I’d use today’s piece to discuss my experiences with a natural human function that continues to evade me… sleep. Y’know what’s really fun? Having a long-term condition that causes chronic fatigue, and yet simultaneously impacts your ability to achieve restorative […]

To The People Who Assume I’ve ‘Stolen’ My Disability Parking Permit

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  By Bree Hogan in The Mighty.   I can walk, but I can’t walk very far, and it’s always with pain and fatigue. I can stand, just not for very long. I use a mobility scooter — a small version of an electric wheelchair — and walking sticks.  Limited as my mobility is, I’m still made […]

Cell-Based Blood Biomarkers For Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome

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  By Daniel Missailidis, Oana Sanislav, Claire Y Allan, Sarah J Annesley, Paul R Fisher in Int. J. Mol. Sci. 2020, 21(3), 1142; [doi.org/10.3390/ijms21031142].   Research abstract: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a devastating illness whose biomedical basis is now beginning to be elucidated. We reported previously that, after recovery from frozen storage, lymphocytes (peripheral blood monocytic cells, PBMCs) from […]

Has The “Reptilian Brain” Gone Haywire In ME/CFS ? Back To The Brainstem We Go.

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By Cort Johnson in Health Rising.   The most primitive part of the brain, the brainstem – a  part of “the reptilian brain” – doesn’t get much respect in medical research. VanElzakker pointed out that most brain scan studies focus on the upper, more highly developed parts of the brain.  Because brain imaging techniques can’t […]

My Story – Living With Severe M.E.

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  By Jo Moss in A Journey Through The Fog. Foreword: Myalgic Encephalomyelitis (M.E.) is an incredibly isolating and debilitating condition but I don’t want your sympathy, that’s not why I’m writing this piece. All we (the M.E. community) ask is for understanding and education. We want to be taken seriously by medical professionals and […]

York Carers Centre

York Carers Centre

Welcome to the March 2020 news update for York Carers Centre.   News Carers socials for 26 to 40 (ish) year olds We’re delighted to have received funding to offer socials for 26 to 40 year old carers in York. Our next one is at the Escape Room, Micklegate on Thursday 26 March early evening […]

My Disability Is Dynamic

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  By Brianne Benness in Medium. Maybe the media has led you to believe that all disabilities are visible and static. Disabilities caused by chronic illness can be anything but. The relationship between chronic illness and disability can be a complicated one. Not everyone who is disabled is chronically ill, and vice versa. And when I […]

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