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.
Trial By Error: More On The CDC; Reader’s Digest; And BBC’s Newsbeat
By David Tuller, DrPH. It’s been almost a year since the CDC removed its recommendations for GET and CBT as treatments for ME/CFS (or CFS, or ME, or CFS/ME, or even SEID or whatever else one calls this illness or cluster of illnesses). When questioned about the decision, the agency explained that people had […]
General Data Protection Regulation (GDPR)
From Which ? Consumer Rights. The General Data Protection Regulation (GDPR) strengthens your personal data rights, including the way companies handle your data and redress for misuse of that data. What is GDPR and how will it affect me? On 25 May 2018 a massive change in the way companies must handle data, […]
6 Worrying Things About Online Shopping
By Carlton Boyce in SAGA Magazine. I have been an avid member of eBay for the past 14 years and a customer of Amazon for almost as long. Both have transformed the way I shop – and probably not in a good way if you happen to be a local retailer with a […]
What is ME / CFS ? Understanding A Mystery Illness
From HPCarr.com. Millions of people around the world are trying to understand what is ME / CFS. It is a life-limiting condition that can affect anyone – dancers, athletes, Doctors, successful movie stars, the young and old. Imagine waking up tomorrow and suddenly your body isn’t working. You can’t walk, talk, or think clearly. Your […]
Aphid Explosion: Why Are The Skies Filled With Greenfly And How Can You Get Rid Of Them ?
By Gordon Port in The Conversation. The warm, still weather of May is great for us and for many plants and animals, but some of these creatures are a nuisance. Around this time every year in many parts of the northern hemisphere, people begin complaining about a plague of tiny green insects filling […]
People With Chronic Conditions Don’t Want Pity – We Want Understanding
By Jo Cole in HUFFPOST. If you see a person who you know has a chronic health condition out and about it’s probably because they’re having a ‘better’ day When I bumped into a former colleague who told me I was looking well I had mixed emotions. I don’t want to seem ungrateful […]
Comments Inquest Ruling: Young Drama Student Merryn Crofts Killed By M.E. | 18 May 2018
By John Siddle, PR Manager, ME Association. A devastating disease that some experts insist is all in the mind led to the death of a young drama student, a landmark inquest today ruled. Merryn Crofts, 21, weighed less than six stone and had spent the last three years of her life totally bed-bound […]
ESA Sanctions Are Counter-Productive And Dangerous, MPs Are Told
By John Pring in Disability News Service. Imposing benefit sanctions on disabled people is counter-productive, ineffective and “probably too dangerous”, a trio of experts have told MPs. The Commons work and pensions committee also heard that the failure of the Department for Work and Pensions (DWP) to research the impact of its sanctions […]
How The Gut Influences Neurologic Disease
From Brigham and Women’s Hospital in Science News. A study published this week in Nature sheds new light on the connection between the gut and the brain, untangling the complex interplay that allows the byproducts of microorganisms living in the gut to influence the progression of neurodegenerative diseases. Investigators from Brigham and Women’s Hospital (BWH) have […]
Purpleman Plans 22-Hour Marathon For Manchester Bomb Victims
From Minster FM News. The York street entertainer Purpleman is planning a tribute the victims of the Manchester Arena bombing which claimed the lives of a Mum and Dad from the city. He will stay out all night as part of a 22-hour marathon on Stonegate in their honour. It comes as York Minster […]
How Many Times Must a Story Be Told…?
From Spoonsekkerdotcom. Sorry I’ve not been blogging recently. I put the blog to one side to concentrate on another project but I didn’t realise how long it would take. Needing to take breaks every five minutes to replenish my brain when I’m writing doesn’t make for speedy progress. Today, however, it has been […]
‘I’m At My Wit’s End’: Why Chronic Fatigue Patients Are Fed Up
By Daniella White in The Canberra Times. Susan Hutchinson was never shy of an adventure, from climbing volcanos in Rwanda to joining the army reserves. She now uses a mobility scooter to get around, can only work 10 hours a week on her PHD and relies on other people to help with everyday tasks […]
Why I Started A ‘Knitathon’ To Raise Awareness And Funds For ME/CFS
From The Mighty. My name is Lauren Childs and I am the founder and organizer of the “All About M.E. Knitathon.” I live in the west midlands in England, UK. I wanted to create an awareness project which was going to be eye-catching and a way in which the ME/CFS forgotten individuals from […]
Why We Won’t Have A Paperless NHS Anytime Soon
By Victoria Reay in The Conversation. The NHS is going digital. Slowly. After spending billions of pounds on IT projects of variable success, the aim is now for the NHS to be largely paperless by 2023. There is no doubt that the NHS needs to digitise its paper records, and it needs to link up the […]
Inside The Isolation Caused By ME/CFS Hypersensitivity
By Jo Moss in The Mighty. I find hypersensitivity one of the hardest myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) symptoms to cope with as it can be so isolating. Hypersensitivity comes in many forms: hypersensitivity to light, touch, noise, smells, foods, medication, chemicals, heat, cold and irritants like pollen and dust. All of these […]
Brave Upwell Teenager Annie Fowler Speaks Out To Raise Awareness Of ME
By KentOnline reporter in Lynn News. An Upwell teenager has spoken out about her fight with a debilitating illness that has left her on daily medication and with no energy. Annie Fowler, 15, has ME (Myalgic Encephalomyelitis) a chronic fluctuating neurological condition which affects around 20,000 young people in the UK. She is sharing […]
Cheers ! Competition Launched To Find York’s Best Blooming Beer Garden
From YorkMix. A competition has been launched to see which York pub can transform its beer garden into the best blooming oasis in the city. Bloom! – the brand-new, four-day horticultural festival – has teamed up with YorkMix to launch the hunt for York’s Best Blooming Beer Garden 2018. The idea couldn’t be simpler. Any pub […]
‘I’m Not Looking For Pity, Just A Cure’
By Melissa Bailey in stuff.co.nz. OPINION: This week is M.E (Myalgic Encephalomyelitis) awareness week. M.E. is a multi-system disease, affecting not only the neurological system but also the immune, musculoskeletal, endocrine and cardiovascular systems. It is a neuro immune disease that is in desperate need of research and a cure. Millions of people are affected […]
The Charts May Be Getting Sadder But Popular Music Has Never Been More Varied
By Adam Behr in The Conversation. In 1985, the best selling song in the UK was Jennifer Rush’s The Power of Love. Thirty years later, it was Uptown Funk, by Mark Ronson, featuring Bruno Mars. From soft-rock power ballad to dance track, these were two very different chart toppers. It’s obviously difficult to […]
Invest In ME Research Biomedical Research Into ME (BRMEC) Colloquiums
The Invest in ME Research Biomedical Research into ME (BRMEC) Colloquiums are research meetings organised by the charity to encourage biomedical research into ME and international collaboration amongst researchers. This has been one of the main objectives of the charity. Invest in ME Research began arranging biomedical research conferences in our first year and have continued them […]
Column: ‘We Are Ill. We Are Not Faking This Illness. It Is Not In Our Heads’
By Corina Duyn in The Journal. We have all heard the news that yet again the HSE and the government are letting the ill people, especially women, of Ireland down. One illness that rarely receives the attention of the press, the HSE and the government, is called ME. ME ME (or Myalgic Encephalomyelitis) is classified […]
Being Negative About My Illness Doesn’t Make Me Less Of A Warrior
By Megan Klenke in The Mighty. I’ve been struggling with writing a lot lately. Who am I kidding, I’ve been struggling with everything lately. I feel this need when I write and a lot of the time in person (basically anytime I’m talking to anyone outside of my family, my boyfriend and my best friend who is […]
‘Urgent Change’ Needed To Improve Lives Of ME Sufferers
From STV News. (Although written prior to ME Awareness Day on 12 May, this article still has an important message.) Scotland’s only nurse specialising in myalgic encephalomyelitis (ME) has called for urgent change to help improve the lives of at least 20,000 Scots affected by the condition. NHS Fife’s Keith Anderson said […]
Saved – The 180-Year-Old York Theatre Royal Arches Threatened With Demolition
From YorkMix. They are a part of York entertainment history – and now they have been saved from the wrecking ball. This row of 180-year-old stone arches once adorned York Theatre Royal – but they have been at 79 Fulford Road since the theatre was remodelled in 1879. Despite their history, a developer […]
The Prevention Of ME/CFS ?
From the ‘A Ship Of My Own Making’ blog. ME/CFS can’t be prevented, we all know that. But do we? Certainly it isn’t something that medical professionals talk about, or ME/CFS advocacy and patient support groups, and equally certainly there is no proven method of prevention. I, personally, don’t believe that that means […]
Why Are Britain’s Job Centres Disappearing ?
By Dan Flinn in The Conversation. The jobcentre. It used to be a staple of the British high street, where the unemployed went to sign on and look for work. But Britain’s national network of jobcentres is currently undergoing radical change as the government implements multiple welfare reforms and cuts as part of its continued […]
My Daily Routine Living With . . . Chronic Fatigue Syndrome
By Carmel Breen in The Irish Times. Imagine: you slip gently into the Land of Nod as a high-drive, progressive, active, healthy person only to awaken to an unexpected, uninvited invader. Under the cloak of darkness, it has stealthily and rapidly colonised your world, rendering you a useless, frustrated spectator in the brutish […]
Belle And Sebastian’s Stuart Murdoch To Join Campaigners Marking ME Awareness Day
By Catriona Webster in The Sunday Post. BELLE and Sebastian frontman Stuart Murdoch will call on people to “make a noise” to help improve the lives of at least 20,000 Scots living with myalgic encephalomyelitis (ME). The lead singer of the indie band, who has lived with the condition most of his adult life, […]
Time For Unrest: Why Patients With ME Are Demanding Justice.
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