Firstly, let me just say that The York ME Community is not a charity. I will not be asking you to put your hands in your pockets for cash. What I believe we need so much more at the moment is awareness of the illness and for that we need people who are learning about ME and therefore able to tell others. There are ME charities, and if in the future you or your business wish to do a charity run or whatever in aid of ME, I will happily help and support that aim.
Civil War Re-enactment – Scampston Hall – 25 to 28 August 2017
Sealed Knot members from around the country will flock to North Yorkshire for the largest Civil War event in the UK! Experience the horrors of a nation at war with itself, brother against brother, father against son, families torn apart. Cannon will roar, musketeers will volley, an all action battle will unfold when […]
Home Sweet Home
From the ‘This Thing They Call Recovery’ Blog by Jenny. Sickness is scary, end of. It’s something that you carry with you, you can’t just leave it at home and forget that it’s there. If I’m being honest, my own body scares me a bit. I don’t feel safe in my own skin. Your […]
York Neighbours
York Neighbours supports people over the age of 65 living within the City of York in 3 different ways, please see the What Do We Do section for further details. Although we are a church-led initiative we positively welcome people of any or no faith as volunteers and users of our service. Our history We […]
Travel Insurance Companies Are Legally Allowed To Discriminate Against Disabled People – Isn’t it About Time Someone Challenged Them ?
By James Moore in The Independent. Discrimination against disabled people is, in theory, banned in law, even if it’s depressingly common in practice. Unless, that is, you happen to be selling, say, travel insurance. Then the law says, go right ahead. Feel free to put the boot in. If that means people can’t travel, well that’s just […]
Transitioning From An Abled Life
By Christina Baltais in #MEAction. When a sudden and unexpected illness catapulted my life into a completely different path, life as I had come to know it, was irrevocably changed. Prior to this, I thrived on the fast paced career trajectory that our Western ableist society promotes, rewards, and idolizes. I was by […]
Losing Myself To Myalgic Encephalomyelitis
By Lisa Alioto in The Mighty. The doctor walks into the room and gives me my diagnosis – myalgic encephalomyelitis (ME). Finally, a name (and what a name!) to what has been happening. A sense of relief actually washes over me. Almost a weird sense of elation. Even though I’ve just been told I […]
Disability Campaigners From Britain Tell The United Nations The Government Has Betrayed People In The UK
By Ben Glaze in The Mirror on 21 August 2017. United Nations officials will hear evidence of how British ministers are breaching disabled people’s rights today. The UN’s Committee on the Rights of Persons with Disabilities is investigating the UK’s progress in implementing the UN Convention on the Rights of Disabled People. […]
How Can You Be Sure Where ‘Charity’ Donations Go?
By Sean Dilley & James Melley in BBC News. Some 800 cases of charity fraud were reported in the UK last year. But with police warning that they represent just a fraction of the number actually taking place, is enough being done to deal with the scammers? Within hours of the Grenfell Tower […]
“Never Give Up”: Disabled Teacher Scores Victory Over ME/CFS Discrimination In The U.K.
Pike’s story from Health Rising. The Brown Envelope I recently received the dreaded brown Department of Work and Pensions (DWP) envelope. Fully expecting yet more bad news, I tore open the envelope, ready to rip up the letter and fling it in the bin. The letter informed me that in light of my […]
Fab News For Foodies: Nigella Lawson Is Coming To York
From YorkMix. Writer, foodie and TV presenter Nigella Lawson is heading to York this autumn. The star has written a new cookery book and will be signing copies at Waterstones on Coney Street. At My Table is subtitled ‘A celebration of home cooking’, and Nigella calls it “a book of recipes that tell […]
Scientific Progress Stumbles Without A Valid Case Definition
BY Leonard A. Jason in Oxford University Press’s Blog. Current estimates from the Centers for Disease Control and Prevention (CDC) of the number of people in the United States with chronic fatigue syndrome (CFS) increased from about 20,000to as many as four million within a ten-year period. If this were true, we would be amidst an epidemic of unprecedented […]
The Benefits Of Rest In ME/CFS: Swapping Afternoon Naps For Regular Rests
From Laura’s Pen Blog By Laura Chamberlain. I am a member of several ME support groups on Facebook and it has shocked me on several occasions to see people ask “My doctor/ME clinic have told me not to nap, but I can’t get through the day with out it. How do you […]
The Science Of Stress And How Our Emotions Affect Our Susceptibility To Burnout And Disease
By Maria Popova in brainpickings. I had lived thirty good years before enduring my first food poisoning — odds quite fortunate in the grand scheme of things, but miserably unfortunate in the immediate experience of it. I found myself completely incapacitated to erect the pillars of my daily life — too cognitively foggy to […]
Lucy Wicks MP Reveals Mystery Illness Of High Mould Sensitivity
By Jordan Baker in The Sunday Telegraph. Every time she went to see Prime Minister Malcolm Turnbull, Federal Liberal MP Lucy Wicks thought it was nerves that left her feverish and stammering. It took her a while to work out it wasn’t her, or even him — it was his office making her […]
Independent Music Labels Are Creating Their Own Streaming Services To Give Artists A Fair Deal
By Steffan Thomas in The Conversation Music streaming services are hard to beat. With millions of users – Spotify alone had 60m by July 2017, and is forecast to add another 10m by the end of the year – paying to access a catalogue of more than 30m songs, any initial concerns seem to have fallen […]
Airports Are Failing Disabled Passengers, And We Are Tired Of It
By Elizabeth Wright in The Guardian. Returning from Rome after a holiday, my plane taxied to its stand and I waited for all the more ambulatory passengers to disembark. I had wheelchair assistance booked – a much-needed service for someone who, like me, struggles to walk long distances – and the drill […]
ME/CFS In Young People: A Primer
By Russell Logan in Shout Out About ME. Leading international me/cfs experts have written a primer for diagnosing and managing the illness in children and adolescents. The new primer lifts the veil on a poorly-recognized disease ravaging our most vulnerable, leaving some children wheelchair dependent, housebound, or bedbound and many more unable […]
Post Seventeen – The PACE Trial Scandal
From the Blog, puffins&penguins&me I have been wanting to write about The PACE Trial for some time, about the background, the controversy and where we are at today. I have tried, but unlike my usual posts it is very technical, involves a lot of research and there’s a lot to cover. I just don’t […]
Using Mobility Aids When You Have An Invisible Illness
“What happened to you, then?” There’s no ideal time to acquire a long-term chronic illness, but becoming disabled halfway through your undergraduate degree has to be up there in the Least Convenient Life Situations list. Adapting to the student experience whilst learning to live with a painful and debilitating neurological condition isn’t a […]
When Did Girls Start Wearing Pink ?
By Jeanne Maglaty in SMITHSONIAN.COM. Little Franklin Delano Roosevelt sits primly on a stool, his white skirt spread smoothly over his lap, his hands clasping a hat trimmed with a marabou feather. Shoulder-length hair and patent leather party shoes complete the ensemble. We find the look unsettling today, yet social convention of 1884, when FDR was […]
If You Don’t ‘Click’ With Your Doctor, You’re Allowed To Find A Different One
By Shana Burns in The Mighty. The patient-doctor relationship is an important one in many of our lives, even more so when we have a disability or chronic illness, and that’s why it’s essential this relationship runs as cleanly and smoothly as it possibly can. I have seen many different doctors, specialists and medical practitioners in different […]
