The York ME Community

‘A Blow To The City Centre Economy’ – Concerns Over Lendal Post Office Closure Plan

Post Office

  From YorkMix.   Plans by the Post Office to shut its main York branch and transfer services inside WH Smith have raised serious concerns. Under the proposal the Crown Post Office on Lendal would close in May. Built in 1884 by Henry Tanner it is one of the last surviving late-Victorian purpose-built post offices […]

Invisible Disabilities: Just Because You Can’t See it Doesn’t Mean it’s Not Real

Invisible Illness

  From Healthy Living Facts.   Have you ever heard diseases like fibromyalgia called an “invisible disability?” Essentially, invisible disabilities are conditions that can’t be seen but still have serious effects on your ability to live a normal life. The term makes a distinction between conditions like cerebral palsy, where the effects of the disability are […]

Trial By Error: Some Thoughts About NICE

David Tuller

  By David Tuller, DrPH. The UK’s National Institute for Health and Care Excellence (NICE), which develops clinical guidelines for a range of medical conditions, is currently selecting a committee to develop a new guidance for the illness it refers to as myalgic encephaloymyelitis/chronic fatigue syndrome (ME/CFS). The new guidance will replace one written in 2007, when […]

Understanding Your Blood Pressure And How To Help Control It

Blood Pressure

      By Ruth D’Alessandro in The Huffington Post.    It’s important to get your blood pressure checked at least every five years because the higher your blood pressure the higher your risk of developing problems with your health’, is the advice of Sue Williams, a practice nurse at a busy Surrey GP surgery. […]

What You Would See If You Looked Under The Blanket Of ME/CFS

Lonely

  By Ali in The Mighty. Sometimes I feel like I am lost, not as in aimlessly wandering and off the track, but as in missing and can’t be found. But I am here, under blankets. Much of the time I can usually be found under an actual blanket on the couch or in my […]

‘Invisible’ Disabilities: Car Park Confrontation Prompts Call For Greater Recognition

Invisible Illness

By Laura Collins and Lucy Robinson in ABC.Net Australia.   Fed up with judgemental looks, comments and confrontations, a young South Australian woman living with a debilitating disease is calling for more recognition of ‘invisible’ disabilities. Key points: Sarah Larcombe has undergone seven major surgeries in nine years She has a disability permit and is […]

Care Charges Are Driving Disabled People Into Debt, Says Report

dns-sticky-short1

  By John Pring in Disability News Service. Charging disabled people for their care and support is driving many of them into debt and forcing them to cut their spending on food or heating, according to new research by a network of disabled people’s organisations and their allies. The study by the Independent Living Strategy Group […]

This Is Personal: BHC’s Patient-First Perspective

Bateman Horne Center

  By Rachel Black in The Batema Horne Center.   Bateman Horne Center is guided by a board of directors that is intimately connected to ME/CFS and FM. Many have sons, daughters or are themselves managing an illness that has taken much of their life away. The Horne in Bateman Horne Most of you know that our […]

UN Warns Of Damage To “The Fabric Of British Society” As The State Turns On Its People

food-bank-500-350

  By Jack Peat in The London Economic.   Drastic cuts to social support and welfare risk damaging the very fabric of British society, a UN report has today revealed. Concluding his 12-day visit to the country the UN Special Rapporteur on extreme poverty and human rights, Philip Alston, said the UK Government’s policies are […]

Roman Holiday: How Chester Became The Most Accessible City In Europe

Frances-Ryan,-L

      By Frances Ryan in The Guardian.   A step up to a restaurant and no threshold ramp in sight. A pub with its function room upstairs, making attending a friend’s birthday drinks impossible. A kerb that hasn’t been flattened, essentially imprisoning you in the road. To a wheelchair user, such as myself, […]

The Gut Microbiota At The Intersection Of Diet And Human Health

Gut

  By Christopher L. Gentile, Tiffany L. Weir et al in Science.   Abstract Diet affects multiple facets of human health and is inextricably linked to chronic metabolic conditions such as obesity, type 2 diabetes, and cardiovascular disease. Dietary nutrients are essential not only for human health but also for the health and survival of the trillions […]

When I Can’t Hide My Chronic Fatigue Syndrome Anymore

ME

    By Kirsty Hird in The Mighty.   I remember in the late 1990s watching a film about a group of teenagers who dabble in witchcraft, with disastrous consequences. They use a form of magic called a “glamour,” which allows the witches to create an illusion, concealing the true form of something. In the film, glamours are used […]

Kylie Minogue To Play Scarborough Open Air Theatre Next August

kylie-minogue

By Graham Clark in The Yorkshire Times.   The first headliner to play Scarborough Open Air Theatre has been announced. International pop star Kylie Minogue is to play a concert in the town on Thursday 1 August 2019. This is another coup for Scarborough and the Open Air Theatre after Britney Spears appearing there in […]

9 Tips To Guide You Through A PIP Benefit Application

Benefits

By Jo Moss in A Journey Through The Fog.   We all know the anxiety inducing feeling of the dreaded brown envelope falling on your door mat. Being assessed, or reassessed for health and disability benefits, is both exhausting and scary. We are often made to feel we are faking it or exaggerating our symptoms. […]

Trial By Error: How To Avoid Ethical Review

David Tuller

  By David Tuller, DrPH I have written many posts about BMJ Open’s 2011 school absence study, which reported that school absence records could be useful in identifying children with chronic fatigue syndrome. However, for reasons not yet adequately explained, the investigators exempted the study from ethical review on the grounds that it qualified as “service […]

Woman In A Wheelchair Reveals Ordeal Of Simple Tasks Like Buying New Clothes

Wheelchair

  By Tanveer Mann in Metro.   Today is Purple Tuesday – and no, it’s not yet another day for crazy shoppers trying to bag a bargain. It’s actually pretty serious and is the first of its kind aimed at highlighting some of the challenges disabled people face while shopping. The national day was founded […]

Purple Tuesday: 6 Ways Disabled Shoppers Would Like The High Street To Change

Accessibility

By Natasha Hinde in Huffpost.   Almost one in five people in the UK are disabled. That adds up to 12 million people with a collective spending power of £249 billion, yet neither the high street nor individual retailers are catering to them. “We are an untapped market and at a time when the high […]

Shining A Light On Chronic Fatigue Syndrome, A Little Understood Disease Among Doctors

Chronic

  By Jennie Spotila, For the Inquirer.   I recently went to a new doctor. He looked over my chart: “Chronic fatigue syndrome,” he read, and then he glanced up at me. “You don’t look tired,” he quipped. “There, I made it go away.” I’ve been sick for 24 years, and I get comments like […]

Dear Bug… When The Nights Are Long…

Jessica

    By Jessica Taylor-Bearman. My escapades with the change of drugs reached fever pitch three weeks ago, when I rang up the doctors with a blood pressure of 80/50….The dearest junior doctor had told me or more like made me promise that if my blood pressure went under 90/60, that I’d ring for an […]

ME: What You And Your School Need To Know

childcare

By ME Foggy Dog in Innovate My School.   Founder of ME Foggy Dog, ME advocate and ME sufferer. I have raised over £10k for ME research since 2014, and am now in the process of setting up a social enterprise that will offer ME training to healthcare, business and education professionals. I don’t ‘do’ […]

Trial By Error: An Australian Exchange With Professor Sharpe

David Tuller

  By David Tuller, DrPH. Below is an exchange between members of the Australian ME/CFS community and Professor Michael Sharpe. The open letter from patients and advocates was prompted by a tweet this week from Professor Sharpe that many considered offensive. He has since deleted it. This post includes the initial tweet as well as […]

Are “Old” Muscles Holding People With Chronic Fatigue Syndrome (ME/CFS) Down? Plus Tompkins’ Team Promises New Insights

Cort_Johnson

      By Cort Johnson in Health Rising.   “New data collectively supports the presence of specific critical points in the muscle that are affected by free radicals.” Fulle et. al. A group of pioneering Italian researchers have been studying the muscles of people with ME/CFS – a rather lonely task – for over 15 […]

Trial By Error: Yet Another Letter About The Lightning Process Study

David Tuller

  By David Tuller, DrPH.   This morning I sent the following letter to Fiona Godlee, editor-in-chief of The BMJ and editorial director of BMJ. I cc-d Carol Monaghan MP, Darren Jones MP, and Nicky Morgan MP. ********** Dear Dr. Godlee— More than a dozen years ago, a group of leading medical journals agreed that […]

Yorkshireman Achieves His Round-The-World Cycle Dream

long-distance-bike-ride-918x516

  From The Yorkshire Times.   A former Ripon Grammar School student has achieved his dream of circumnavigating the globe by bicycle after arriving back home in Yorkshire, where his epic 17,134-mile journey began 15 months ago. Iain Johnston successfully completed his monumental challenge when he cycled into his home town of Ripon after pedalling […]

Humans of ME/CFS – Camille C.

ME !

  From Solve ME/CFS Initiative.   I was an elementary school music teacher, community volunteer, church pianist, wife, and young mother when I became ill in March, 2000. My doctor said I had mono and I was totally bed bound. The sickness wiped away my memory and I lost memories of my children as babies, […]

New Way Of Monitoring Medicines Could Vastly Improve Lives Of People In Care Homes

pills-main

By Sue Jones and Mel Storey in The Conversation.   More than 50% of care home residents are being prescribed medicines that they do not need, or which do not properly address their health problems. Antipsychotics, for example, are often overused to treat the behavioural and psychological symptoms of dementia. But this problem is not easy to remedy. The […]

The Triumph of Eminence-Based Medicine

Research Study

  By Brian Hughes in Not The Science Bit.   Lines are drawn A quarter of a million Britons have been diagnosed with myalgic encephalomyelitis (ME), the condition also known as chronic fatigue syndrome (CFS). ME/CFS is a severe debilitating illness that renders patients either temporarily or perennially immobile. Sufferers will have often led very active lives […]

When I Can’t Hide My Chronic Fatigue Syndrome Anymore

Lost

      By Kirsty Hire in The Mighty. I remember in the late 1990s watching a film about a group of teenagers who dabble in witchcraft, with disastrous consequences. They use a form of magic called a “glamour,” which allows the witches to create an illusion, concealing the true form of something. In the film, glamours are used […]

I Can Walk, But That Doesn’t Mean I Don’t Need A Wheelchair

Wheelchair

By Rebecca Giddings in The Mighty. Everyone knows when you are ill, you are in bed and can’t do anything. Obviously this example is great for someone with the flu, but what if you have a chronic illness, an illness that is going to last your lifetime? Are you supposed to just hide away in […]

On Autism & Chronic Fatigue Syndrome

Educating-Children-Teens-with-CFS

From Syndrome A.   When I was in second grade, a little girl started calling me Weird One. I was elated. I felt that I had been knighted with some sort of public identity and it felt wonderful. I felt as though I belonged in some way and I hardly ever felt as though I […]

Exposing The Deception: SEID Is Not ME!

ME

  By Gabby Klein in Relating to ME.   My thanks to advocate Eileen Holderman for her consultation on this blog post The US government health agencies and some organizations who purport to represent people with ME (pwME) are deceiving this community by purposefully conflating names and criteria for myalgic encephalomyelitis (ME), and the government constructs […]

The illness People Can’t See: Living With Chronic Fatigue Syndrome

Lost

  By Hannah Gibson in The Spinoff.   What is it like to have a disease that nobody can ‘see’ and which society can shame you for talking about? To mark International ME/CFS Awareness Day, Hannah Gibson writes about her experience with ME/CFS, and the struggle to have her condition legitimised in Western medicine. When […]

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