ME Support and Awareness in York – The York ME Community

Hundreds Of Families To Benefit From Claudia’s Law, Which Comes Into Force Today

Claudia

  From YorkMix.   A new law named after Claudia Lawrence is expected to help hundreds of families, allowing them to take control of their missing loved ones’ financial affairs. Named after chef Claudia, who vanished without a trace after leaving her York home a decade ago, Claudia’s Law came into force today Wednesday. Police […]

Land Next To Cemetery Could Become Temporary Car Park

Fulford Roadworks

    By Chloe Laversuch in YorkMix.   Land next to Fulford Cemetery could be turned into a car park for construction vehicles while building work is carried out nearby. A planning application has been submitted for land off Fordlands Road to be used as a temporary car park until July 2020. A new care home is […]

My Invisible Illness Just Became Visible And Here’s Why

Lisa

    By Lisa Alioto in Realistic Optimism.   I have an invisible illness, meaning you cannot see it, but it’s oh, so present for me every minute of my life. I’m constantly exhausted, in pain, have a variety of cognitive deficits, vision loss, light, sound, and temperature sensitivities, a weakened immune system, and many, many […]

Preparing For University When You Have A Disability

University

  By Chloe Tear.   Oh how I remember this time well! I actually graduated on Wednesday, but preparing for the whole thing only seems like yesterday. University was such an unknown step, even if it was a step I knew I wanted to take. My health at the time was far from ideal and […]

How To Book Access Theatre Tickets – Seats For Disabled Patrons

Life of Pippa

    From the Life of Pippa Blog.   Ever since I started theatre blogging and my chronic illness-friendly reviews, I’ve had messages asking about how I book my access tickets and ensure my needs are met. It’s one of those things that I’ve been doing for so long now that it’s become second nature, so […]

Glimpsing The World: My Joy And Pain

Blue and white 3D illustration with the word blog repeated  in different shades

    By Naomi Whittingham in A Life Hidden.   There is an indescribable joy in experiencing the outside world after many months or years of incarceration.  The dance of sunlight through the leaves of trees; the flicker of shadows on grass; the touch of a gentle breeze.  When darkness and isolation have been the foundation of […]

Post Thirty Four. Planning For A Future With Severe ME.

Caminage

  By Pheobe Boag in Puffins, Penguins and Me.   It’s been a good few months since my last post, and you’ll soon find out why, I’ve had a lot going on. With so much happening, my limited brain function has had to be directed elsewhere, and my poor wee blog has been neglected as […]

Straight Talk From Carol Head As She Steps Down From Solve ME

Carol Head

  By Cort Johnson in Health Rising.   ME/CFS Rears Its Head Again A commitment to social justice runs in Carol Head’s blood. She founded a non-profit which has given away millions to support entrepreneurs who work on global poverty, and was a founding board member of another non-profit that tells the stories of marginalized women’s lives. Her work […]

RACGP’s 2015 Guidelines On Graded Exercise Therapy Published In A UK Medical Journal

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  By Laura Beere in Emerge Australia.   Apologies for all the acronyms and brackets in the post below. We’ve tried to make this as clear as possible so that we can keep you informed about a (sadly this time – negative) development that could impact on the treatment and welfare of people with ME/CFS. […]

Care for Someone With Severe Myalgic Encephalomyelitis

Severe ME

By Greg Crowhurst in ME Support.   Linda, my wife, collapsed over two decades ago and very quickly became bed bound. In the months leading up to her collapse, she had had several operations and a long chest infection. For almost two years prior to that she was in constant pain, experiencing severe pins and […]

Disability Comes With An Extortionate And Shocking Price Tag

Samantha Renke

  By Samantha Renke in the Metro.   Do you ever get the feeling you’re being ripped off? Paying over the odds is something every disabled person encounters. Time and time again, we are faced with eye-watering prices for ‘basic’ products and equipment that are labelled as ‘disability’ or ‘specialist’ but have a price tag that is […]

The Emerge Australia Media And Research Digest (028) 26th July 2019

Australia

  Welcome to the Twenty-Eighth Emerge Australia Media and Research Digest! The fortnightly summary of research and media about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) If you’d like the Digest to drop directly into your inbox every fortnight you can sign up for the Digest here. (This will ONLY sign you up for the Digest – this […]

Rambles With Remus

Euan's Guide

    From Euan’s Guide.   Welcome to the first in a series of regular guest blogs by Zoe, a Euan’s Guide Ambassador, and her assistance dog Remus. The two live in Farlie on Scotland’s West Coast and the blog will focus on Zoe’s adventures using an all terrain mobility scooter. Part 1: A New […]

Confessions Of A Chronic Fatigue Skeptic

how-to-survive-working-with-a-chronic-disease-1

    By Shell Pettifer in The Mighty.   “Chronic fatigue, my arse!” I have a confession to make. I have oftentimes throughout my life internally judged people for being overly dramatic. There, I’ve said it. I am a closet censure. I am guilty of internal eye rolls, doubtful compassion and quite frankly some completely uneducated […]

More Than Half Of Disabled Passengers Still Find Air Travel Difficult, Says Regulator

Disability

    By John Pring in Disability News Service.   More than half of passengers who describe themselves as having an impairment that limits their day-today activity find travelling by air difficult, according to a regulator’s annual report on access at the UK’s major airports. The Civil Aviation Authority’s (CAA) annual report on disability access contains […]

Ellie Goulding ‘Set To Marry At York Minster’ – And The Royals Are Invited

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      From YorkMix.   It looks increasingly likely that pop star Ellie Goulding will marry her fiancé at York Minster next month. YorkMix understands that the cathedral is the hot favourite for the wedding between Ellie and her boyfriend Caspar Jopling. Jopling is a member of an aristocratic Yorkshire family, who live at Frickley […]

Emerging Insights #1: McGregor’s Grand Conception Of ME/CFS

Australia

  By Cort Johnson in Health Rising.   This is the first in a series of blogs that report on the recent EMERGE conference in Australia. The different conference format – which allowed for long presentations – allowed the presenters to dig more deeply into their topics than usual. Longtime Australian metabolomics researcher Neil McGregor […]

What I Hear When You Tell Me ‘But You Look Fine’

Frustration Chronic Illness

  By Melanie Leong  in The Mighty.   Fairly recently, I had this weird experience where a person with a chronic illness threw the “but you look fine!” line on me. I am pretty certain I didn’t respond. In fact, I don’t really recall what happened afterwards because I was in shock. Isn’t it chronic illness code that we […]

Potential Dangers Of Exercise Or Activity For ME And Chronic Fatigue Syndrome

Graded-exercise-therapy-300x192

    From the How To Get On Blog.   We are taught that exercise is supposed to make us feel better. Staying active is supposed to make us healthier. Getting out of bed is supposed to improve our quality of life. Sadly, for people with Myalgic Encephalomyelitis or “Chronic Fatigue Syndrome,” the opposite can […]

What To Consider When Employing People With Disabilities

Disability

  By Robert Stack Forbes Councils Member.   President Trump kicked off his re-election campaign last month with a list of accomplishments, from the market rebound to unemployment being “the lowest it has been in 51 years.” According to a Society for Human Resource Management (SHRM) article, “With unemployment at a low, fewer people are looking for jobs. Many employers […]

An Apology To My Wheelchair

Wheelchair

    From the Creamcrackered.me Blog, dated 11 March 2019.   Around two weeks ago it was International Wheelchair Day and this got me thinking about my relationship with my own wheelchair and the journey we’ve been on together. So, I decided to write a little something about my new identity as part-time (ambulatory if […]

Please Stop Trying To ‘Fix’ My ME/CFS

Mighty

  By Simone DM in The Mighty.   When you become ill, all you want is for others to be compassionate and understanding. Yet when you come down with something like ME (myalgic encephalomyelitis), that not even your doctor comprehends, it’s a different story. Others are quick to pass judgement, believing you are somehow causing your […]

But Make It Accessible: Wax Poetic Clothing

Natasha Lipman

  By Natasha Lipman.   Hello and welcome to my new blog series “But Make It Accessible”, where I speak to brands that are working to create beautiful and stylish clothes that are also accessible. Rediscovering my love for fashion since becoming a wheelchair user has brought a lot of joy into my life, but […]

Invest In ME Research Newsletter July 2019

invest

Invest in ME Research is an independent UK charity campaigning for and facilitating biomedical research into myalgic encephalomyelitis (ME). More details of the charity are here.   Clinical trial at Quadram At the IIMEC14 international conference in London in May Professor Simon Carding from Quadram Institute announced the intention to conduct a clinical trial for ME in Norwich […]

The York ME Community – York Inter Company Fantasy Football League For The York ME TGA Shield

FreeGreatPicture.com-19724-football

The York ME Community runs an Inter-Company Fantasy Football League sponsored by TGA Mobility. This is to help raise awareness of the illness that affects around 250,000 people in the UK, and 800 in the York area alone. Of those around York, 200 are likely to be severe, meaning house or bed bound. On the […]

Onset: Part III (Connections)

Jen

  By Jennifer Brea.   I’ve previously written about how a bad mold exposure and my acute, viral onset of myalgic encephalomyelitis (ME) could have directly and indirectly damaged my connective tissue, including the ligaments in my neck, causing craniocervical instability (CCI). A key mediator of that damage might have been mast cell activation and collagen-degrading enzymes. The coup de grâce (and it really was, oddly, […]

Practical Solutions To Everyday Spoonie Problems

Spoonie

  By Jo Moss in A Journey Through The Fog.   Having a chronic illness means everyday tasks can be challenging, exhausting and painful. But there are steps we can take to make life easier, to limit the stress caused and to conserve our energy for more enjoyable activities. Here are some practical solutions to […]

Chronic Fatigue Syndrome (ME/CFS) Article Rocks Top Medical Journal

Anthony_Komaroff

    By Cort Johnson in Health Rising.   It took Tony Komaroff over thirty years to get this done but it may have been worth it. Komaroff, Harvard doctor, researcher and ME/CFS advocate, has been studying, writing about and advocating for ME/CFS research since at least 1987 when he was the senior author on […]

ME/CFS Research: The First Quarter Of 2019 In Review

Scientist using a microscope

  By Rochelle Joslyn (PhD) Edited by Allison Ramiller, in Solve ME/CFS Initiative.   2019 is off to a strong start for ME/CFS research! From the search for sensitive and specific biomarkers in neuroimaging and CPET testing, to the use of next generation (RNA) sequencing in transcriptomic analyses of peripheral blood, findings from the first […]

What To Do If You Can’t Book A GP Appointment, As 1 In 3 Say They Can’t Get Through By Phone

GP

    By Natasha Hinde in HUFFPOST.   If you’ve ever found yourself relentlessly pressing the call button to phone your GP, only to get beeped at before the call abruptly ends, you’re not alone. In fact, new figures show almost one in three people can’t get through to their GP by phone. Many of us have […]

World Emoji Day 2019: First Look At The New Disability Emojis For Release On iOS This Autumn

emoji-wheelchair

  By Rhiannon Williams in iNews.   Disability-themed icons, a yawning face and a sloth are among the new characters to be released in honour of World Emoji Day. Apple has previewed a selection of emoji due for release in the autumn, including a range of inclusive disability-themed characters. The reveal coincides with World Emoji Day, an unofficial […]

Cheapest Airport Car Parks Revealed – Where A Space Costs Just £43.99 For A Two-Week Break

Airport

  By Stephanie Bateman in Doncaster Free Press.   New research into parking prices across UK airports by My Late Deals reveals the huge variations in price consumers are paying. My Late Deals compared the cost of parking a car for two weeks during the summer holidays (5th – 19th August 2019) at an official airport […]

Stress, PTSD And Parents Of Kids With Disabilities

disability

    By Dr. Liz Matheis  in The Mighty.   As a Psychologist, I am in the business of receiving phone calls from parents worried about their kids with disabilities. During that initial phone call, parents give me a quick run-down of their child’s symptoms, the struggles the family at large is facing, and the specific goals […]

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