Disability

Chronic Fatigue Syndrome: Living With An Invisible Illness

BBC News

  From BBCNews.   Lorna Bryson, 25, suffers from Myalgic Encephalomyelitis (ME) also known as chronic fatigue syndrome. The illness means she has a low immune system, gets headaches, sore muscles and joints, and needs at least 12 hours sleep every night. Doctors didn’t believe there was anything wrong with Lorna growing up as she […]

It’s OK You Admit Your Chronic Illness Sucks

Frustration Chronic Illness

  By Kalee Oravec  in The Mighty. I’ve been sick my whole life. I’ve never been able to keep up with my friends because of fatigue, and my pain interfered with all of my past hobbies. You might think I’m used to it by now, but I’m not. No, it still sucks. A lot. It sucks because I […]

New Disabled-Friendly Lift To Be Installed At The Acropolis By Summer 2020

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      From Greek City Times. The historical Acropolis in the Greek capital is set to receive a new lift by summer 2020 after the Central Archaeological Council (KAS) approved plans for the project which will now enable improved disabled access to the ancient site and popular attraction. The KAS had agreed last year to replace a repeatedly […]

Attitudinal Barriers, Fragranced Products, And Invisible Disabilities

Fragrance

  From Seriously “Sensitive” to Pollution.   Having been housebound for far too many years due to having to avoid exposure  to common, everyday products and materials that disable me, has given me time to observe the world (and sometimes even make a little sense of it). Still, there are some things that make no […]

WHO Retires “Benign” From “Benign Myalgic Encephalomyelitis” For Final ICD-10 Release

World Health Organisation

  BY ADMINDXRW in DX Revision Watch.   In my report for the December edition of the ME Global Chronicle, I set out how the G93.3 terms: Postviral fatigue syndrome Benign myalgic encephalomyelitis Chronic fatigue syndrome are classified in the World Health Organization’s international version of ICD-10 and how these terms have been classified for ICD-11. I have […]

ME Awareness On BBC Radio York – Update

Radio

The deed has been done. Recording was done earlier today. I didn’t manage to cover everything, but hopefully enough to raise a bit of ME Awareness.  Confirmed it will be on after 9pm on Friday 21 Feb; probably too late for some unfortunately. BBC Radio York 103.7 FM.#MEAwareness

This Is What Living With Chronic Pain Is Really Like

ChronicPainManagement

    By Julia Ries in Huffpost.   This story is from HuffPost in the US – and part of Pain in America, a nine-part series looking at some of the underlying causes of the opioid addiction crisis and how we treat pain. Chronic pain comes in all different shapes and sizes — it burns, […]

ME Awareness On BBC Radio York

Radio

I’m hoping to be on BBC Radio York on 103.7 FM on Fri between 7 and 10 pm.  As my head doesn’t always work properly at that time of the day, they’ve kindly arranged for a pre-record on Thur afternoon.  I just hope I manage to put some sensible words together about ME ! #MEAwareness.

Disabled Workers Paid 12% Less, ‘Damning’ UK Official Figures Show

Disability

    By Patrick Butler in The Guardian.   Disabled people continue to face prejudice in the workplace campaigners have said, after latest government figures showed they were paid on average 12.2% less than those without impairments, equivalent to £1.48 an hour. According to Office for National Statistics (ONS) data, the median pay for disabled employees in […]

Trial By Error: The Danish ME Association’s Open Letter

David Tuller

  By David Tuller in Trial By Error.   The Danish ME Association has sent and posted the following open letter to “Danish health politicians,” with a very impressive list of international signatories. It seemed important to give this letter wide circulation. (Note that footnotes 4 and 5 are linked to the names of two […]

Labour Leadership: Starmer Backs Calls For Free Social Care

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  By John Pring in Disability News Service.   The MP leading the race to be Labour’s next leader has become the first candidate to back calls by disabled people’s groups for the introduction of free social care, funded by national progressive taxation. Sir Keir Starmer, Labour’s shadow Brexit secretary, said he supported the motion passed […]

The Identity Crisis: Am I Defined By Chronic Illness ?

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      By Rhiann Johns in Brain Lesion And Me.   Often chronic illness sneaks into your life, like a thief in the night. It takes everything that once defined us; stealing our identity and imagined futures. For those, like me who have suffered from symptoms associated with illness for most of their life, […]

Changes Promised To Cut Stress Of PIP Assessments

Benefits

  By Lauren Harte in the Belfast Telegraph.   Communities Minister Deirdre Hargey has vowed to improve the process for those applying for Personal Independence Payments (PIP) following a call to make the troubled system “fair and accessible for those who genuinely need it”. When PIP was introduced in Northern Ireland in 2016, replacing Disability […]

To Those Who Find My Illness ‘Hard To Understand’ When They See Me Smiling

Chronic

    By Tiffany Early in The Mighty.   My husband and I had a conversation about how others perceive my illness the other day. It wasn’t a confrontational conversation — it was more the random musings that happen when you’re waiting for dinner to come out of the oven. Joe mentioned that a mutual friend had once […]

You Don’t Look Sick: What It’s Like Living With An Invisible Illness

Invisible Illness

By Laura Abernethy in Metro.   A year ago, we launched the You Don’t Look Series. Over the last 12 months, we’ve chatted to people from across the UK about their experiences of living with an invisible illness. Most people have symptoms almost every day but because their condition is hard to see, they are […]

Callng All York Businesses !

Business

  Do you know of a business in York that would be happy to put up an A5 poster on their premises with a bit of info about Myalgic Encephalomyelitis (ME) to help raise a bit of awareness ? This is an illness that could well be affecting their workforce today. If so please get […]

Myalgic Encephalomyelitis (ME) In The Young. Time To Repent

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  By Ola Didrik Saugstad in Wiley Online Library.   Myalgic encephalomyelitis (ME)/ Chronic fatigue syndrome (CFS) is a complex disease with symptoms from multiple organ systems. The severity of these symptoms ranges from mild to severe with the most severely affected confined to a dark room to achieve sensory deprivation. Two incidence peaks have been […]

DWP Officials Accused Of ‘Tampering’ With Thousands Of Benefit Assessments

DWP Caxton House

  From Welare Weekly.   Benefit officials working for the Department for Work and Pensions (DWP) have altered or binned thousands of work capability assessment reports submitted by healthcare professionals, it has been claimed. DWP officials reduced qualifying points awarded during face-to-face assessments and in some cases binned the reports entirely, according to media reports. […]

French Researchers Discover A New Component In Blood

Blood Cells

    By Iliriana Bisha Tagani MD in Gilmore Health News.   French researchers discovered the presence of complete and functional mitochondria in the bloodstream. Ultimately, this discovery may lead to better diagnosis, monitoring, and treatment of many diseases, including some cancers.   Our blood consists of red and white blood cells and platelets bathed in […]

Miles Without Stiles Easy Routes

Wheelchair

    From Lake District National Park.   What are Miles without Stiles? These are 48 routes across the National Park suitable for people with limited mobility, including wheelchair users, families with pushchairs, and the visually impaired. Use the interactive map below to explore the routes available or choose from the menu on the left. Distances […]

“Left Out”: An ME/CFS Movie Of Commitment, Hope And Despair

Fluge and Mella

  By Cort Johnson in Health Rising.   It was a project birthed in hope. Pal Schaathun, a Norwegian filmmaker would document what he hoped might be the end of chronic fatigue syndrome (ME/CFS).  That, unfortunately, turned out not to be but Schaathun ended up documenting – in strikingly beautiful fashion – the next best […]

Whatever You Do Today, Let It Be Enough

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    By Jo Moss in A Journey Through The Fog.   I wrote this post especially for ProHealth Inspirational Corner and it first appeared there on the 11th March 2019. “Your worth is not measured by your productivity” We live in a society that teaches us that unless we are pushing ourselves outside our comfort zone, […]

Support For ‘Amazing’ Campaigner Whose Vital Legal Case Could Help Thousands

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By John Pring in Disability News.   Disabled campaigners travelled from across the country this week to show support for a fellow activist as she took on justice ministers in the high court over the ruinous costs disabled people can face when they take disability discrimination cases. If she wins, Esther Leighton could give hope to thousands […]

Myalgic Encephalomyelitis (ME) In The Young. Time To Repent

mecfs-tagcloud

 By Ola Didrik Saugstad in Wiley Online Library. Myalgic encephalomyelitis (ME)/ Chronic fatigue syndrome (CFS) is a complex disease with symptoms from multiple organ systems. The severity of these symptoms ranges from mild to severe with the most severely affected confined to a dark room to achieve sensory deprivation. Two incidence peaks have been described between […]

Meet The Researchers Behind A New Trial Into ME

Research

    The Quadram Institute on the Norwich Research Park is holding a public meeting to talk about their ongoing research into myalgic encephalomyelitis (ME or ME/CFS). The event will also be a chance to give your opinions about the planned future clinical trial into a new form of treatment that targets gut microbes for […]

What No One Tells You About Being Housebound

Lonely

    By Hannah Radenkova in Super Pooped: Adventures for the Exhausted.   Whether you’re housebound some or all of the time, here are some things you might come across. 1. Time loses all meaning. The five years I’ve been housebound feels simultaneously like no time at all, and an eternity. I regularly get my own […]

Schools Are Failing Legal Duties On Accessibility Plans, Says Report

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    By John Pring in Disability News Service.   Secondary schools across England are breaching their legal duty to publish plans showing how they will improve access for disabled pupils, according to new research published today (Thursday). The research, carried out on behalf of The Alliance for Inclusive Education (ALLFIE), says the government, the education watchdog […]

You Don’t Look Sick: ‘You Might Think I Look Better But I Still Feel Horrible Every Day’

Frustration Chronic Illness

By Laura Abernethy in The Metro. Amy Norris, 23, from Southampton has postural orthostatic tachycardia syndrome (PoTS) and chronic fatigue syndrome (also known as myalgic encephalomyelitis) (CFS/ME). As part of our, You Don’t Look Sick series about invisible illnesses, Amy chatted to Metro.co.uk about living with both conditions and how most people still don’t understand chronic […]

“The Tompkins Effect” at Harvard University: More Than Just An ME/CFS Research Center

research

  By Cort Johnson in Health Rising.   The Ron Tompkins Effect Ron Tompkins had recently come back from a meeting with over a dozen MD’s and specialists from Mass General Hospital who’d evinced a strong interest in ME/CFS. Dr. Bateman has said it’s easy to get researchers, at least, interested in this disease but […]

Challenging Insensitive Comments And “Who Has It Worse” Competitions

iit-scientists-develop-material-that-can-harvest-water-from-fog

      By Jo Moss in A Journey Through The Fog.   “Life is not a competition. Life is about helping and inspiring others so we can each reach our potential.” Does anyone else feel like they have to bite their tongue a lot? Do you hide a lot of what you are feeling […]

Judge’s PIP Comments Suggest Thousands Have Had Claims Wrongly Stopped

benefits

  By John Pring in Disability News Service.   Thousands of disabled people could have had their benefit claims stopped unlawfully, campaigners believe, after a judge found that letters sent out by government contractors were failing to stress the serious consequences of failing to attend a face-to-face assessment. Upper tribunal judge Nicholas Wikeley said he […]

The Illusion You Will Be Forever Able Bodied And The Limits Of Empathy

Coyne

  By James C Coyne in Medium.   This is an edit of something I wrote in 2016, which I return to read every now and then. Sometimes I tinker with it, like now. I wrote it soon after I first became a professional advocating for patients with chronic fatigue syndrome and myalgic encephalomyelitis, a set […]

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