Welcome To The York ME Community

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.

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

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  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 […]

Mother Of Disabled Girl Is Asking Shops To Stop Banning Single Use Plastic Straws

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  By Lucy Middleton in the Metro.   A mother with a disabled daughter is fighting for stores and restaurants to not ‘jump the gun’ when it comes to banning single use plastic straws. Karen Grimwade’s daughter Lucy, 15, was diagnosed with severe Myalgic Encephalomyelitis (ME) in 2015 and cannot drink without a straw. But […]

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

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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

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      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

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  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.

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  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

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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

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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!

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  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 […]

Health Benefits Of Seeds: Sesame, Pumpkin, Sunflower & Linseed

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    From SAGA Magazine. Seeds such as pumpkin, sesame and sunflower pack a powerful health punch and a quick look at their nutrient content will tell you why. Seeds contain high levels of essential fatty acids, the full profile of amino acids needed to form complete and digestible protein, plus vitamins A, B, C […]

York Fireworks Display And Bonfire Guide 2018

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From YorkMix.   Welcome one and all to the land of crackles, oohs, aahhs, hot dogs and smoky-smelling coats. Yes it’s time to celebrate York’s most famous plotter Guy Fawkes by setting fire to things. There are lots of bonfires and firework displays in and around the place. Nothing at York Maze this year though. […]

Woman’s Fight To Stop Disabled People Travelling For Benefit Assessments

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  By Emily Hennings in This Is Local London.   Claudette Lawrence, 49, is an activist and campaigner who also suffers with myalgic encephalomyelitis (ME), which can cause extreme mental and physical exhaustion. She has set up the petition because she has recently come into contact with a lot of people who are having problems when it […]

Millions Suffer From An Invisible Disease: My ME/CFS Story

Ryan Prior

  By Ryan Prior in CNN Health.   yan Prior visited 16 doctors with various specialties to identify his illness. Ryan Prior is a cross-platform associate producer at CNN. He has suffered from chronic fatigue syndrome for 11 years. The views expressed in this article are solely his. Atlanta (CNN)Every morning, I shave, brush my […]

Venice Is Flooded, But Other Cities Are In Much Greater Danger

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  By Richard Tol in The Conversation.   Venice has flooded. But while worry about the worst floods in a decade and warnings about the impacts of climate change and sea level risedominate most of the media coverage, there’s a more complex story to be told. In Venice, floods are a feature, not a bug. The city was founded by people fleeing […]

Carol Monaghan Continues Fight For Parliamentary Debate On ME

Carol Monaghan SNP

This is the text of an email I’ve sent to York MPs to gain support for a Parliamentary Debate on ME. We are entering an extremely crucial period where NICE are reviewing their guidelines to potentially remove the harmful Graded Exercise Therapy (GET) as a recommended treatment for this illness. They are however loading their […]

Grandma With Severe Chronic Fatigue Syndrome Misses Daughter’s Wedding And Grandchildren’s Childhoods

ME

  By John Siddle in Surrey Live. The cruel condition affects 250,000 people in the UK. An 80-year-old from Farnham has had to skip every family gathering, birthday and Christmas over the past 20 years after a shock diagnosis of a devastating ‘living death’ illness. Nancy Collins a former NHS nurse was struck down with Myalgic Encephalomyelitis (ME) 20 […]

Playing Nice With NICE

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  From Dizzy Girl Writes.   In view of my last blog post, I have decided to email NICE to talk about my experiences of having ME under the current guidelines and to raise my concerns about their panel. The latest tweets I’ve seen suggest that their panel for the review of guidelines for treating […]

ME/CFS, Naviaux’s Cell Danger Response And A Nervous System Under Threat

Nervous system

    By Veronique Mead M.D. in Health Rising.   Thanks again to Veronique for providing her intriguing take on chronic fatigue syndrome (ME/CFS). This is one of a series of articles from Health Rising which feature hypotheses created by health care professionals with ME/CFS or who are associated with ME/CFS. (It is a long post – you […]

A Continuing Saga Of Ineptitude

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From Invest In ME Research.   Comment After failing ME patients for so many years with their guidelines, and despite being taken to a judicial review (by patients), and despite the NICE guidelines director seeming to admit that the current guidelines were unfit for purpose, NICE were able to begin afresh and really concentrate on […]

Why These Yorkshire Roads Have Been Named The Top Most Haunted In the Country

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  By Alex Evans in The Yorkshire Post.   Two blood-chilling Yorkshire roads have been named in a list of the most haunted routes in the country. Stories of gruesome deaths, haunting spectres and a ‘terrifying’ hairy creature have lingered on certain Yorkshire roads for many years. Haunted roads in Yorkshire The B1249 between Driffield […]

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