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.
Olwen Tinnion – RIP
I just heard this morning that we have lost Olwen Tinnion who had become very ill with pancreatitis. Sadly, we also know that Olwen had severe ME. Her sister has said that she passed very quickly and peacefully, surrounded by love and family. This has hit me like a bombshell this morning. Olwen was […]
Why The Netflix Docuseries ‘Afflicted’ Is Harmful For The Chronic Illness Community
By Paige Wyant in The Mighty. “Afflicted,” a new Netflix docuseries that premiered on August 10, follows seven people who live with chronic illnesses. I originally thought “Afflicted” was going to shed light on less-known illnesses and elevate the stories and voices of those who struggle with them, but the docuseries did the opposite. Instead […]
What I Was Really Telling My GP When I Swore At Her In The Exam Room
By Suzette Bishop in The Mighty. I’m not proud of cursing out a former GP. On top of that, I think she may have been even shorter than me, a very petite and soft-spoken woman. I had been going to her for over a year, and I was back for a routine follow-up. I was […]
Trial By Error: The BPS Brigades Score Another Own Goal
By David Tuller, DrPH. Not long ago, Sir Simon scored an own goal by enticing a childhood buddy to enter the PACE debate. That buddy, attorney and social commentator Mike Godwin, soon pronounced the trial—which Sir Simon had called “a thing of beauty”–to be “so profoundly flawed that it cannot be trusted.” Sir Simon tweeted […]
Martin Lewis: A Drugs Bust – Stop Letting Big Pharmaceuticals Rip You Off !
By Martin Lewis in MoneySavingExpert.com. Harry Potter’s got nowt on the pharmaceutical industry. It’s full of real wizards – both those who make drugs that help, and the marketers who have a raft of tricks to persuade us there’s hidden magic in their brands. Drug companies spend millions promoting ‘only-use-the-name-you-know’ messages… but it’s […]
“Sticky Blood” – Antiphospholipid Syndrome, POTS, Chronic Fatigue Syndrome And Fibromyalgia – The Dysautonomia Conference #4
By Cort Johnson in Health Rising. This blog is part IV in a series of blogs covering the issues presented at the 2018 Dysautonomia International Conference in Nashville, Tennessee. As if we needed another syndrome. Chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), fibromyalgia (syndrome), irritable bowel syndrome (IBS) are old-timers in the ME/CFS/FM world. In the last […]
Helen’s Story
From The Disabilities Trust. Helen is 36 and lives at Jane Percy House, the Trust’s service for people with physical disabilities in Northumberland. She has Myalgic Encephalomyelitis (M.E.) a neurological condition affecting the central nervous system which causes long-term, disabling, fatigue, pain and restricted mobility which started after a viral infection in 2015. Before M.E. Helen […]
York Library To Stock ‘A Girl Behind Dark Glasses’, By Jessica Taylor-Bearman
After a few attempts, we have persuaded York Library to stock ‘A Girl Behind Dark Glasses’, By Jessica Taylor-Bearman. It’s the story of her life with ME. I’m just awaiting the call to let me know that it’s in ! Book Description: From a darkened world, bound by four walls, a young woman called Jessica tells the […]
Research That Predicted The 2018 Heatwave Says It May Come Back For The Next Four Years
By Luke Bailey in iNews. The research was carried out before the summer heatwaves that sent temperatures in the UK and other parts of the world soaring this year. The next four years are likely to see more global heatwaves, say scientists in research from before the 2018 heatwave hit. The researchers were looking […]
You and ME: An Update On Myalgic Encephalomyelitis For Psychologists
By Rose Silvester in the On Eagles Wings Blog. Rose Silvester is a consultant clinical psychologist based in Wellington, New Zealand, currently working at the Regional Personality Disorder Service at Capital & Coast District Health Board (CCDHB). In the context of her son’s illness she has immersed herself in the literature available on ME/CFS and […]
The Heart Of ME/CFS ? Lipkin’s Collaborative Probes The Impact Of Exertion
By Simon McGrath in ME/CFS Research Review. The hallmark symptom of ME/CFS is post-exertional malaise (PEM), a prolonged, grim and disproportionate response to exertion. While Dr W. Ian Lipkin’s NIH-funded Collaborative – the Center for Solutions for ME/CFS – is focusing primarily on how problems in patients’ gut microbiomes might drive the disease, his […]
7 Secrets I’ve Been Ashamed to Tell Others About My Illness
By Sally Rudderty in The Mighty. I’ve struggled with severe ME/CFS for 11 years now and I’m only just realizing I’m ashamed of my situation. I think I’ve known it all along at the back of my mind, but only now has it formed itself into concrete words in my head. And on this piece of paper. I’ve […]
How To Avoid Pension Scams
From The Financial Conduct Authority. Don’t let a scammer enjoy your retirement – find out how pension scams work, how to avoid them and what to do if you suspect a scam. Pension scams can be hard to spot. Scammers can be articulate and financially knowledgeable, with credible-looking websites, testimonials and materials that are […]
DWP Refuses To Pay £125 To Discover Number Of Disabled People In Full-Time Jobs
By John Pring in Disability News Service. Ministers are refusing to commission work that would cost just £125 and would show how many disabled people are in full-time paid employment, and how that number has changed under successive Tory-led governments. Ministers, including the current work and pensions secretary Esther McVey, have repeatedly boasted of […]
Multidisciplinary Rehabilitation Treatment Is Not Effective For Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Review Of The FatiGo Trial
By Mark Vink and Alexandra Vink-Niese in Health Psychology Open. Abstract The FatiGo trial concluded that multidisciplinary rehabilitation treatment is more effective for chronic fatigue syndrome/myalgic encephalomyelitis in the long term than cognitive behaviour therapy and that multidisciplinary rehabilitation treatment is more cost-effective for fatigue and cognitive behaviour therapy for quality of life. However, FatiGo suffered from a […]
Where’s The Cheese Gromit ?
Good morning everyone. I hope you’re waking to an ‘ok’ day. It looks like our weather has returned to some sort of normality, which I’m sure will suit some of you better ! Here at Clayton Towers I tend to be resting up all week to try and make best use of the weekends, with […]
It’s Back – And More Bonkers Than Ever ! Micklegate’s Soapbox Challenge Ready To Roll
From YorkMix. Wheels fixed? Check. Brakes tested? Check. Completely bonkers costume ready? Check. Across the city these last minute preparations are underway as York revs up for another day of daft stunts and wacky races. The York BID Micklegate Run Soapbox Challenge will see 40 hand-made carts hurtle down the city’s royal street in a […]
2019 Blue Badge Scheme: Everything You Need To Know About The Hidden Disability Changes
By James Kelly in Contract Hire & Leasing. The blue badge disabled parking scheme is undergoing its biggest shake-up since it was introduced in 1970, but what exactly will change? Last month, the Department for Transport (DfT) confirmed that from 2019, people with hidden disabilities will be granted access to the scheme too. […]
Study Finds Reduced Ability To Respond To Energy Demands In ME Patients’ Immune Systems
By Sasha Nimmo in ME Australia. Scientists from Australia’s Griffith University found ‘a significant reduction of glycolytic reserve in resting natural killer (NK) cells’ from people with Myalgic Encephalomyelitis (ICC ME) compared with healthy controls. “These findings suggest resting NK cells from ME/CFS patients have reduced ability to increase glycolytic flux to respond […]
New Harvard Chronic Fatigue Syndrome (ME/CFS) Research Center Fulfills Crucial Need
By Cort Johnson. In May the Open Medicine Foundation announced they’d committed a major chunk of change – $1.8 million – to fund an ME/CFS Collaborative Research Center at Harvard Medical School affiliated hospitals. With the addition of the Harvard Center, chronic fatigue syndrome (ME/CFS) research centers are now found at two of […]
Trial By Error: The CDC’s Update For Healthcare Providers
By David Tuller, DrPH. Last summer, the US Centers for Disease Control removed graded exercise therapy and cognitive behavior therapy from its website as recommendations for treatment of the illness it was by then calling ME/CFS. Its stated explanation for the change–that readers had misunderstood the recommendations–was nonsense. Readers understood all too well what […]
An Open Letter To M.E.
From The Cornerstone For Thoughts ! By Ev. Dear Myalgic Encephalomyelitis, Do you remember when you decided that I’d be one of your 250,000 victims? You probably don’t but I can remember the early days of my symptoms. It began in late 2015/ early 2016, I think, annoyingly however I put you down […]
Benefits Calculator
From Age UK. What is the benefits calculator? Our personalised benefits calculator can tell you if you’re potentially entitled to claim extra money, based on the information you provide – such as whether you’re single/in a couple, where you live or if you care for anyone. It’s easy to use, quick, free and all […]
The RCCX Hypothesis: Could It Help Explain Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia And Other Diseases ?
By Remy in Health Rising. The RCCX hypothesis blog by Remy is the third in a series of blogs by Health Rising which highlight hypotheses produced by health care professionals which attempt to shed a new light on the chronic fatigue syndrome / fibromyalgia spectrum of diseases. Chronic illness is exploding in modern […]
5 Mistaken Assumptions About The Chronically Ill
By Toni Bernhard J.D. in Psychology Today. The chronically ill carry the extra burden of frequently being misunderstood. I hope the day will come when chronic illness (which includes chronic pain) is recognized as a normal—and inevitable—part of the human life cycle. I also hope the day will come when people understand that chronic illness can […]
Karina Hansen 8 (Updated): The Aftermath Continues
By Valerie Eliot-Smith. GOOD NEWS: I originally published this post in June 2018. I am re-publishing it today (10 August) as there has been an encouraging development since then. Thank you to Bente Stenfalk (see below) for the updated information. Original post follows the update. UPDATE August 2018 On 9 July 2018, psychiatrist Dr Charlotte Emborg […]
York Cat Trail
From Visit York. About us Free fun for young and old, this trail will guide you around York. Highlights include Clifford’s Tower, Shambles and York Minster, plus lots of cats! Pick up a trail leaflet in store, have some FREE fun in York, see the sights and find the cat statues on our […]
Children And Families Need More Support Over Chronic Fatigue, Says ME Charity
By Chris Ord in The Oxford Post. AN OXFORD mother has backed a charity’s calls for more support for children in the county suffering from the chronic fatigue condition ME. Iona Fabian from Aston has said doctors, schools and social services must be more informed over the condition which has affected her 20-year-old […]
When Gaining Weight Because Of Chronic Illness Is A Common Story
By Lorna Fenech in The Mighty. Even before I was diagnosed with myalgic encephalomyelitis (ME), I always found it hard to love myself and my body. Low self-esteem and body dysmorphia contributed to a generally negative perception of myself, particularly my weight. Over the years I tried to manage this by staying healthy. I have […]
Woman In Mobility Scooter Thrown Off Northern Train
by Katie Campbell in UNITE. Sara Jane Harvey, who blogs as Agony Autie, posted a startling and disturbing video on Thursday of her being thrown off a Northern train because she was using a mobility scooter. Sara, who underwent surgery two weeks ago and has a heart condition, Ehlers Danlos Syndrome and autism, was told […]
Giving Property And Money To Family
By Holly Thomas in SAGA Magazine. Worried that your hard-earned savings and precious assets may eventually benefit the taxman rather than your loved ones? A little forward planning can make a big difference. Handing over cash or property can provide a much-needed boost for grandchildren who are hoping to get on the property […]
8 Ways You Can Support Your Friends With ME And Fibromyalgia
By Victoria Fernando in The Mighty. I have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and I am writing this post in honor of International ME/CFS and Fibromyalgia Awareness Day, this Saturday, May 12th, 2018. Kudos to all those surviving and doing their best whilst living with these diseases, and to the caregivers and loved ones who love and […]
It Seems Impossible That People Don’t Believe Having ME Is A Serious Illness
By Skye Wheeler in HUFFPOST. Myalgic Encephalomyelitis, chronic fatigue syndrome, CFS/ME. These are just a few terms to describe one of the most destructive illnesses known to man. Manifesting as unrelenting fatigue and profound pain, ME/CFS is destroying the lives of 250,000 people in the UK. One in four are so severely affected […]
All Creatures Great And Small Has Been Voted Yorkshire’s Greatest Television Show Of All Time
From The Yorkshire Times. In a major poll, conducted by Dalesman magazine to celebrate the fiftieth anniversary of regional television in Yorkshire, viewers were asked to name their favourite show either set or made in the county. More than 3,000 votes were cast in the poll, with the period BBC veterinary drama starring […]
Time For Unrest: Why Patients With ME Are Demanding Justice.
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