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.
Ten Top Tips For Accessible Recruitment
By Jo Verrent in Unlimited. Unlimited, in its current form, has been recruiting for disabled trainees since 2013. What have we learnt about accessible recruitment? Jo Verrent, Senior Producer for Unlimited, gives us her top ten tips… Target where you advertise – find out where disabled people might be, and go […]
Boost Your Retirement Income
From Independent Age. Many older people are missing out on thousands of pounds that they’re due. Our free guides can help you boost your income by claiming benefits you may not have realised you’re entitled to – even if you have savings or own your own home. To read the rest of this story, click […]
It’s Not You, It’s M.E. A Video To Help You Understand About ME.
Click on ‘Read Post’ to see the video.
Leaving Frailty Behind. A Conversation With Laura Hillenbrand
By Paul Costello in Stanford Medicine. She is an author of extraordinary success. Laura Hillenbrand’s Seabiscuit and Unbroken are literary phenomenons: Together, there are more than 13 million copies in print, and both have been made into blockbuster motion pictures. Seabiscuit, published in 2001, tells the story of a racehorse that captured America’s heart during the Great Depression. Unbroken, […]
Is The Brain Causing The Small Fiber Neuropathy In Fibromyalgia (And ME/CFS ?)
By Cort Johnson in Health Rising. It seemed ever so clear. The reduction in the number of small nerves in the skin and eyes of roughly forty percent or so of the people with fibromyalgia (FM) and chronic fatigue syndrome (ME/CFS) must bring the body – as opposed to the brain – into […]
Top 7 Tips for Claiming Disability Benefits With M.E.
By Ann Innes in The ME Association. I’m Ann Innes, consultant welfare rights adviser to the ME Association and formerly to Stockport ME Group. I run a private service to support people throughout the claims process, from benefit entitlement checks, application, preparing for the face-to-face assessment and attending as an advocate, all the […]
More Than Half Of Disabled Passengers Still Find Air Travel Difficult, Says Regulator
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 […]
My Disabilities Are Invisible. I Shouldn’t Have To Prove Them To Strangers
By Isabelle Jani-Friend in The Guardian. I was recently on a packed Central line train into London. Luckily, I managed to take the last priority disabled seat. My osteoporosis and the fatigue I experience meant it would be hard for me to stand for the 40-minute journey to Oxford Circus. I felt a […]
Pacing Is A Simple Concept. So Why Do I Find It So Hard ?
By Jo Moss in A Journey Through The Fog. Living with a chronic illness like ME/CFS creates many challenges. Along with the multitude of symptoms, we also have to learn to adapt to the restrictions placed on our lives and to manage our limited energy levels. The term “pacing” crops up repeatedly […]
Trial By Error: An Ill-Informed Article In The Guardian
By David Tuller, DrPH People who know little or nothing about the illness or cluster of illnesses variously called myalgic encephalomyelitis, chronic fatigue syndrome, CFS/ME, and ME/CFS can’t seem to stop writing stupid and ill-informed stories about it. And Professor Michael Sharpe seems to blame “Americans”–rather than his own disastrous research–for his […]
Planning Breach Claim Over Site Of 1066 Battle Of Fulford
By Mike Laycock in The Press. AN ARCHAEOLOGIST claims planning conditions have been breached at York’s biggest current housing development on the site of the 1066 Battle of Fulford. Chas Jones said an interpretative trail of the Germany Beck site should have been created by developer Persimmon before the first of 650 new homes was occupied. […]
Anna spends 22 hours a day in bed. But experts hope they’re close to a cure
By Melissa Cunningham in The Sydney Morning Herald. Anna Kerr often spends up to 22 hours a day in a darkened room unable to get out of bed. Following her first pregnancy, the Thornbury mother-of-two felt something was amiss. At first, it was a newfound reaction to wine and coffee, triggering nausea, weakness […]
No One Prepares You For The Grief Of Chronic Fatigue Syndrome
By Asa Lovell in The Mighty. No one prepares you for the grief and feelings of inadequacy you get when you have chronic illnesses. They make such a huge impact on your life that they derail you, stop you from achieving the things you’re working for in the time you’d planned. You […]
The Frail Teenager Set To Spend All Of Her Summer Holidays In Her Bedroom
By Mark Smith in Wales Online. Lola Brandrick, 13, from Swansea, is crippled by pain and is constantly exhausted. While all her school mates are out enjoying their summer holidays, poor Lola Brandrick can only dream of joining them. The 13-year-old is confined to her bed, constantly exhausted and crippled by widespread […]
Words From A Hidden World
By Naomi Whittingham. Welcome to my blog. The main purpose of this site is to bring together my existing work, but I also hope to add new writing from time to time. I have never blogged before and am looking forward to the freedom of writing as I wish, with full editorial control. (The downside is […]
New Hub Of ME/CFS Research Opens At Harvard Plus The “Hidden Gem” And New Insights
By Cort Johnson in Health Rising. Times are changing. The Stanford area with its bevy of researchers and doctors (Ron Davis, Robert Phair, Mark Davis, David Kaufman, Bela Chedda, Jose Montoya, Rahim Esfandyapour, Michael Zeineh, Fereshteh Jahanbani and others) seemed like “it” for ME/CFS. But look at Boston now! A new hub […]
Because Of ME, I Can Only Imagine Being The Mum That Others Get To Be
By Sophie Cooklynne in The Mighty. Downstairs, my two-year-old son, Lucas, is playing. He’s a beautiful, clever and sweet little boy who lights up my entire world. Upstairs, I lie in a single bed, trapped in the shell of a body; bedridden permanently and suffering dozens of symptoms that mean that […]
Ten Top Tips For Accessible Recruitment
By Jo Verrent in Unlimited. Unlimited, in its current form, has been recruiting for disabled trainees since 2013. What have we learnt about accessible recruitment? Jo Verrent, Senior Producer for Unlimited, gives us her top ten tips… Target where you advertise – find out where disabled people might be, and go out of your […]
The Impact Of ME
By Jenny in Scope. Hi, my name is Jenny and I’m 24 years old. I’ve had Myalgic Encephalomyelitis (M.E) for 5 years but have been experiencing chronic pain and fatigue caused by multiple health problems from the age of 16. One of my hobbies is writing my blog: This thing they called recovery. The […]
When I Can’t Control How Chronic Illness Is Affecting My Body
By Laurel Younis in The Mighty. OK, here it – the biggest and most important secret you will need to survive chronic illness. The key to surviving chronic illness is surviving it in any way you can. Now I know what you may be thinking, “Really? Is this seriously the advice you’re giving […]
Netflix Sued For Defamation By ‘Afflicted’ Subjects Who Say Docuseries Painted Them As “Crazy Hypochondriacs”
By Erik Pedersen in Deadline. The 50-page complaint (read it here) was filed Wednesday in Los Angeles Superior Court by defendants including Jamison Hill, Pilar Olave, Jill Edelstein and Bekah Dinnerstein. Referred to in the suit as “the Afflicted Four,” they claim they were “duped by Plaintiffs into participating in a salacious reality […]
Phoebe & Georgina’s Sponsored Kayak !
By Georgina & Phoebe in Let’s Do It for Myalgic Encephalomyelitis. Even a live Second World War grenade couldn’t stop us! On Sunday the 28th of July we began our quest to conquer a 25 mile kayak to raise money for Invest In ME Research. This journey consisted of a very early start, […]
Finding Accessible Work With A Chronic Illness
From the Life of Pippa Blog. Since I started blogging, there’s one question I’ve consistently been asked more than any other: how I found my flexible, work from home opportunities. If you don’t already know, I split my time between social media management and content creation in the charity sector, self-employment as […]
‘Dangerous’ Dockless Bikes Blocking Streets, Say Disability Activists
By Ella Wills BBC News. Registered as blind for 15 years, Deborah Persaud travels around London with guide dog Lewis by her side. But on recent walks to work, the pair have faced a new challenge on pavements – dockless bikes for hire. “Lewis has to navigate around them [and] we often end up […]
Are Shared E-Scooters Good For The Planet ? Only If They Replace Car Trips
By Jeremiah Johnson, Associate Professor of Environmental Engineering, North Carolina State University. Shared dockless electric scooters, or e-scooters, transport riders over short distances in cities. Ride share companies promote them as an environmentally friendly choice that reduces dependence on cars. To properly assess these claims, it’s important to consider all relevant environmental factors, including the materials and energy […]
Capita Seeks To Reverse ‘Reputational Damage’ After Death Of Claimant
By Michael Buchanan Social affairs correspondent, BBC News. Benefit-assessment company Capita is going to court to try to reverse the “reputational damage” it says it suffered after a claimant died. Victoria Smith died months after her personal independence payments were stopped following a Capita assessment. The outsourcing company was ordered to pay £10,000 […]
Heatwaves And Flash Floods: Yes, This Is Britain’s ‘New Normal’
By Hayley J. Fowler in The Conversation. “It’s hard to believe, isn’t it, that we had a heatwave just last week?” Those words were spoken by a BBC news presenter, in front of graphic images of fire service rescues, as heavy rain caused floods and landslides which closed many roads and railway lines. In […]
Aid Without Asking: How To Support Someone With ME
By Jonny Foster in #MEAction. The love of my life battles ME/CFS. It’s a disease that my father has also struggled with since I was a boy, so it’s one I know well. I knew life wasn’t going to be simple when we met, but I dove in head-first anyway. I can’t say […]
Myalgic Encephalomyelitis Diagnosis, Treatment & Prognosis
by Louise Sargent in ME Support. Diagnosis There is no test or cure for Myalgic Encephalomyelitis (M.E.) but there are guidelines to help doctors diagnose and treat it. It can take a long time for the condition to be diagnosed, as other conditions that cause similar symptoms need to be ruled out first. Therefore, you […]
Tracking Peripheral Immune Cell Infiltration Of The Brain In ME
Principal Investigator Prof. Jarred Younger Institution University of Alabama, Birmingham, Alabama, USA Start date June 2018 Background and aim Many of the characteristic symptoms of ME/CFS suggest that the immune system is activated in the brains of people with the illness, leading to the release of inflammatory chemicals. This neuroinflammation is known to […]