ME Support and Awareness in York – The York ME Community

“Never Give Up”: Disabled Teacher Scores Victory Over ME/CFS Discrimination In The U.K.

Benefits

  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

Nigella-Lawson-cooking-1010762

    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

120813_SCI_sciencelabEX.jpg.CROP.rectangle3-large

  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

Resting

      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

Human head and brain. Different kind of waveforms produced by brain activity shown on background. Digital illustration.

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

SickBuildingSyndrome-MoldSolutionsNW

  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

listen-to-free-music-online-1167

    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

Air Travel

    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

Russell Logan

    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

Pace-Study-debunkedrev-330x330

    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

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 ?

boys and girls

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

Doctor

  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 […]

Exercise Tests Suggest Autoimmunity Causes The Exertion Problems In Chronic Fatigue Syndrome, Fibromyalgia And POTS

Cort_Johnson

  By Cort Johnson in Health Rising.   Researchers and doctors get interested in ME/CFS in different ways. Many have a personal connection, but for David Systrom,  a pulmonologist, it was all about demand. He didn’t seek chronic fatigue syndrome patients out – quite the contrary.  When Systrom was given control of a clinical cardiopulmonary […]

M.E. Meant This Blog Took Me Several Months To Write

Feeling sad

    By Isabel Walter in Huffpost.   On holiday in the Peak District in June 2007, three months after being diagnosed with ME, I sat down one afternoon with a pile of postcards and discovered I could no longer write. The words were clear in my head, but the pen in my hand made […]

Four In Five Unpaid Carers Socially Isolated Because Of Their Role

caring-for-carers

    By Paul Gallagher in iNews.   Four in five unpaid carers feel lonely or socially isolated because of their role, a new poll suggests. The amount of people struggling to deal with caring rises to 86 per cent for those who provide care for 50 hours or more each week, according to a […]

Genetic Home Testing: Why It’s Not Such A Great Guide To Your Ancestry Or Disease Risk

dna

    By Johnathan Pettitt in The Conversation.   Genetic variation is an unavoidable feature of life. As a consequence of this – and unless you are an identical twin – you are genetically unique. You have a distinctive combination of genetic variants, almost all of which are shared with your parents, although shuffled into […]

Why Are Doctors And Patients Still At War Over M.E.? How The Best Treatment For The Debilitating Condition Is One Of The Most Bitterly Contested Areas In Medicine

Choosing-recovery-strategy-for-fibromyalgia-and-mecfs-narrow-1040x520

  By Jerome Burne For The Daily Mail.   Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It’s linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — ‘like a dead battery’. The condition first reached mainstream consciousness in the Eighties following […]

How A Relapse Of ME/CFS Caused Me To Develop Anxiety

anxiety-is-my-friend

  By Clare Rudderty in The Mighty.   I’m going to tell you something only my husband, parents, sister and one friend know. Why would I share such a secret with thousands of people? Well, I hope having the courage to do so helps some of you know you’re not alone in your experiences. So, […]

Trial By Error: My E-Mail Exchange With NICE Chief Executive

David Tuller

  By David Tuller, DrPH.   On Friday, I had an e-mail exchange with Sir Andrew Dillon, chief executive of the NICE Guidance Executive. The other seven Guidance Executive members are various directors within the NICE hierarchy, including the communications director. This group will make the final decision about whether to accept the provisional decision of a […]

How A New Map Is Guiding Tourists To Some Of York’s Best Businesses

Business-150x150

  From YorkMix.   Want to know where you can find some of the best indepenedent shops and businesses in York? There’s a map for that! Indie York’s new map details more than 100 of the city’s independents, from bars to bookshops, designers to delicatessens. It is now stocked across York, helping both visitors to […]

The York ME Community © 2015