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.
Mast Cell Activation Syndrome & Low Blood Volume
From Syndrome A. Summary Two symptoms occur frequently in people with ME/CFS: Mast Cell Activation Syndrome (MCAS) and low blood volume. What if these are not coincidental? Reading time: 4 minutes 27 seconds People with ME/CFS have less blood than we should. We have low blood volume. We also tend to have a condition […]
The International Consensus Criteria For ME
From ME Advocacy. Revised November 14, 2016 to include steps to evaluate for atypical ME as defined by ICC. MEadvocacy.org understands there is a great deal of confusion about the various criteria for myalgic encephalomyelitis, so we created an easy to follow questionnaire to help patients see if they may fit […]
Scientists Alone Can’t Solve The Antibiotic Resistance Crisis – We Need Economists Too
By Laurence Roope, Richard Smith and Sarah Wordsworth in The Conversation. Driven by widespread antibiotic use, bacterial infections are becoming increasingly resistant to treatment, and the pipeline for new antibiotics is running dry. Recent reports estimate that, without action, by 2050 resistance to antimicrobial drugs will cause up to 10m deaths a year globally and reduce […]
Life-Sized Statue Of The Queen in A New Public Square – York Minster Reveals Ambitious Plans
From YorkMix. A new public square dedicated to the Queen and featuring a life-sized statue of Her Majesty – that’s the remarkable plan unveiled by York Minster today The first public square in the city for nearly 200 years is one of the proposals in the emerging draft Neighbourhood Plan for the York […]
Trial By Error: A Plea To Fiona Godlee On A Familiar Topic
By David Tuller, DrPH On Wednesday, I sent the following to Dr Fiona Godlee, editorial director of BMJ. The topic, once again, was the ethically and methodologically challenged Lightning Process study, which was published two years ago in Archives of Disease in Childhood, a BMJ journal. My letter was prompted by the recent appearance […]
York Balloon Fiesta To Return Despite Traffic Problems
From BBC News. A balloon festival blamed for bringing traffic in York to a standstill is to return to the city. Last year’s York Balloon Fiesta attracted 40,000 visitors, but there were complaints of gridlock on roads and delays to buses. Former Make it York director Steve Brown previously said festival bosses were uncertain […]
Coming Soon: The Great Universal Credit Deception
By Aditya Chakrabortty in The Guardian. How to sell the unsellable? How to pretend utter chaos is a plan coming together? How to persuade the public, who just refuse to buy it, to at least keep on paying for it? I believe I have found the answer. It comes in the form of an internal […]
Severe ME: I Had To Fight The People Supposed To Help Me
by Sam* In ME Australia. Sam (*not her real name) is a teenager living in Australia’s largest city without access to treatment to help her. Sam was prescribed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) repeatedly. After doing GET, Sam became housebound. Sam now has very severe ME and says […]
Better Treatment Needed For 77,000 British Columbians With ME
By Sue Khazaie in The Province. Imagine you are living the life of your dreams. You have a great job, a happy marriage and love traveling. And then you get sick. Really sick. Soon you can’t work, go out, or perform basic household chores. Within weeks, you are bedridden and totally dependent on […]
We Cannot Continue To Let Doctors ‘Gaslight’ Chronic Illness Patients
By Siobhan Simper in The Mighty. Author’s warning: This post contains experiences of gaslighting and abuse. Recently, I saw an all-too-common meme on social media: the inspirational disabled person. The image was of a Paralympic horse rider, with the caption, “no excuses.” Much has been written about the problematic nature of disability “inspiration porn.” What shocked me was when I […]
Opera And Disability
Q&A with Jacqueline Ko. May 12th is the International Awareness Day for chronic neuroimmune diseases. To shine a light on these extremely prevalent yet little-known conditions, I caught up with performer, producer and disability advocate Jacqueline Ko, an award-winning Canadian soprano and co-founder of Opera Mariposa who has lived with the neuroimmune disease […]
He Pioneered Technology That Fueled The Human Genome Project. Now His Greatest Challenge Is Curing His Own Son
By Ryan Prior CNN. (CNN)Multiple times a day, every day, Ron Davis sits with his head bowed, waiting outside his son’s bedroom for a subtle signal that it’s all right to come in. He opens the door to the space where Whitney has spent most of the last decade. Whitney lies motionless […]
Adelaide Oval Lights Up In Blue For ME Awareness Week
By Jac Creedon in ME Australia. Since 2015, Adelaide Oval in South Australia has been lit up in blue in recognition of ME Awareness. This year, it will be illuminated on Thursday May 9. It has been organised every year by Jac Creedon, who has had ME for 28 years. Jac lives […]
The Madness That Is The Micklegate Run Soapbox Challenge Will Return This Year
From YorkMix. One of York’s best days out bounces back this summer. The Micklegate Run Soapbox Challenge returns for a third year on Bank Holiday Monday, August 26 2019. Entries are now open for teams to take part – and if you’d like to sponsor an event that attracted 20,000 spectators last year, and […]
ME Awareness Day – 12 May 2019
On this, our ME Awareness Day, I would like to thank all those who have used their limited energies to try and get the message out about the millions of people worldwide who are dealing with ME. There are too many towns, cities and people to mention, but I can only hope that […]
Why ME And CFS Instead Of ME/CFS ?
by Sasha Nimmo in ME Australia. Why is it important to use ME and CFS? It’s time, Australia needs to leave behind ME/CFS and CFS/ME and adopt the International Consensus Criteria for ME. ‘ME and CFS’ captures an audience who have been diagnosed with chronic fatigue syndrome, as some patients who have been diagnosed with CFS […]
The Guilt Of ME
The Guilt of ME When the beast descends we know the score Strength and hope go through the floor We’ve all been on this road before Another day of guilt Want to take my part in life Want to spend some time with wife Want to cause no further strife Another day of […]
Saving Money On Theatre Tickets As A Disabled Young Adult [AD]
By Pippa, in Life Of Pippa. This post and associated social media posts are kindly sponsored by Triple 7 Events. Find out more about them and book some bargains on their website here [AD]. Let’s be honest: being a theatregoer certainly isn’t the most affordable hobby in the world, particularly as a disabled young person. Whilst […]
19 Things People With ME/CFS Wish Others Understood
By Paige Wyant in The Mighty. Have you ever told someone about your ME/CFS, only for them to respond, “I understand, I’m always tired, too”? Though friends and loved ones may be well-intentioned, it can be frustrating and hurtful when they just don’t “get it.” The reality is that ME/CFS is […]
THE YORK ME COMMUNITY INTER COMPANY FANTASY FOOTBALL LEAGUE
THE YORK ME COMMUNITY INTER COMPANY FANTASY FOOTBALL LEAGUE It’s not only the Premier League that won’t be decided until the last day ! Our Inter Company Fantasy Football League which involves local businesses supporting ME Awareness will also be decided this weekend. You might have missed out on your chance over the […]
Understanding ME And Chronic Fatigue Syndrome In Children
By Claire Tripp in teachwire. Longterm and little-understood illnesses like ME, or chronic fatigue syndrome, can leave pupils misdiagnosed, isolated and forgotten, so it pays to spot the signs, says Claire Tripp… You leave work with “Miss! Miss!” still echoing in your ears, an armful of marking, and thinking of Ellie. Once […]
The £4.2 Million Worth PACE Trial – High Hopes, Deep Fall
From #FindME. Do you trust your GP to give you the right diagnosis and treatment you need whenever you feel ill? Yes, most people do! But what if your GP fails to give an accurate diagnosis and worse, prescribes the wrong therapy? This is exactly what happened in the UK based on […]
York To Be Lit Up In Blue For ME Awareness !
It has been confirmed by City of York Council that the City Walls and Clifford’s Tower will be lit up in blue for ME Awareness from the 10th to 13th of May. The Council will also be putting out Press Releases to cover the event.
These Are The Sheffield Landmarks That Will Be Turning Blue To Mark ME Awareness Week
By Stephanie Bateman in The Star. Landmarks across Sheffield are set to turn blue this weekend. On Saturday, March 11, the Peace Garden fountains will be turning blue alongside many different monuments such as York City walls, the fountain in Geneva, and nine landmarks across the Netherlands including the Rotterdam Bridge to represent ME […]
‘Hard To Cope’ Mum-Of-Two With Chronic Fatigue Says Condition Is Triggered By Her Noisy Kids
By John Siddle and Gemma Mullin, Digital Health Reporter in The Sun. Katy Beardsworth has ME and has to lie down in a dark room when her kids start being loud. Katy Beardsworth, 38, has ME – a cruel illness which presents as unrelenting exhaustion and profound pain. The deeply misunderstood neurological condition […]
ME and My ‘Friend’
ME and My ‘Friend’ I want to chat And things like that Like we used to do It hurts to talk It pains to walk But I’ll get myself to you. I’ll get there, it’s not that far Travel by bus, too tough by car Vibrations turn senses into mire The slightest […]
You Don’t Look Sick: ‘People Say ME Isn’t Real But Trust Me – I Deal With It Everyday’
By Laura Abernethy in The Metro. Over 13.9 million people living in the UK are disabled, but many people live with conditions that you can’t always see. They struggle with symptoms every day but when you see them in the street, you would have no idea that anything is wrong. You Don’t […]
7 Things All Chronically Ill Dancers Can Relate To
From Life Of Pippa. Since being diagnosed with my long-term condition, I’ve realised that there’s a huge correlation between professional dance and chronic illness. For me, it was ballet. I trained intensively all throughout my childhood and early teens and was lucky to enjoy some ultimate highs and accomplishments, until (in a nutshell) […]
Test Can Spot Whether You Have Chronic Fatigue Syndrome, Stanford And UC Scientists Say
By Cathie Anderson in The Tribune. Researchers at Stanford University and UC Irvine appear close to giving people with chronic fatigue syndrome something they have wanted for decades: a biological test that diagnoses their disease, according to a research paper published Monday in the Proceedings of the National Academy of Sciences. Those who suffer from […]
Interview Part 1 – What Does ME Feel Like ?
From Find Millions Missing. Esme and Millie learned over the years how to cope with ME. Esme (21) is a medical student who was diagnosed with ME when she was in school. Millie (23) was diagnosed with 17, right before her final school exams before she headed off to University in England. Both […]
M.E. – Just Cut And Paste…..
M.E. – JUST CUT AND PASTE….. Hair’s a mess, can’t get dressed Can I shower, that’s the test Done ok, the shoes are on Now where the hell’s my energy gone? Another day has been a waste Another day just cut and paste. Can’t get the hang of doing nowt Want to […]
8 Common Myths About ME/CFS Debunked
By Jo Moss in A Journey Through The Fog. For ME Awareness month I want to tackle some of the common misconceptions surrounding this debilitating illness. The lack of belief and ignorance surrounding ME is deep-rooted and causes significant harm to patients worldwide. Due to the disbelief, misconceptions, and stigma that are attached […]
‘My Daughter, 21, Who Died Weighing Five-And-A-Half Stone, Had ME On Her Death Certificate – Yet Some Still Say It’s Not Real’
By Claudia Tanner, in iNews. The mother of Merryn Crofts believes attitudes about the disease haven’t changed since her daughter’s death two years ago. Clare Norton struggles to talk about the day her “beautiful” and “energetic” daughter took her last breaths just days after her 21st birthday. As a mother, she’d felt helpless […]
Probing The Holes In MUS
By Spoonseeker in spoonseeker.com. This is the second in a new series of posts about medically unexplained symptoms (MUS). The first of these, A Morass of MUS, appeared last time. However, I first looked at medically unexplained symptoms over two years ago in a post called Medically Unexplained Assumptions. In this, I travelled all […]
Myalgic Encephalomyelitis Or Chronic Fatigue Syndrome: How Could The Illness Develop ?
By Gerwyn Morris, Michael Maes, Michael Berk and Basant K. Puri in Springer Link. Abstract. A model of the development and progression of chronic fatigue syndrome (myalgic encephalomyelitis), the aetiology of which is currently unknown, is put forward, starting with a consideration of the post-infection role of damage-associated molecular patterns and the development of chronic inflammatory, oxidative and […]
ME Isn’t Real You Know……
ME isn’t real you know ME is all just fake I chose to give up work you know To rely upon the state ME isn’t real you know It’s all just in my mind I just fancied giving up On everything in my life ME isn’t real you know ME is all […]
Who Gets CFS/ME And How Does It Start ?
From #FindME. Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), can affect anyone, even children. Fibromyalgia is a related disease that affects the joins in the body, causing excruciating pain. CFS/ME is most common in women and tends to develop between your mid-20s and mid-40s. Famous celebrities, such as 71-year-old […]
Time For Unrest: Why Patients With ME Are Demanding Justice.
