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.
Don’t Judge Appearances For Accessible Parking And Other Needs
From Invisible Disabilities Association. Don’t judge appearances. People with invisible disabilities don’t LOOK Disabled. Don’t judge appearances when you think you see someone abusing privileges or rights reserved for the disabled because you might be making a common mistake based on perception. Have you ever seen someone get out of a car parked […]
If You’re Constantly Exhausted, Take 3 Minutes To Read Up On Why
By Emma Pritchard in Women’s Health. If you’re barely holding your heavy eyes open as you crawl into the long weekend, then what you’re experiencing might be beyond mere tiredness. And you wouldn’t be alone. According to the Royal College of Psychiatrists, one in five people experiences unusual tiredness at any given time, […]
Yorkshire Communities Urged To Protect Local Pubs As Review Shows Almost 1,000 Pubs Vanished In Britain Last Year
By Mark Lavery in the Yorkshire Post. Communities across Yorkshire are being encouraged to take action to help protect their pubs after it was revealed almost 1,000 pubs vanished in Britain last year as the industry was hit by intense cost pressures and business rate increases. A total of 914 pubs disappeared in […]
Migraine & M.E.
From M.E. Support. Migraine: isn’t that just a bad headache? Migraine is a condition which affects people of any age, gender and ethnic group. Far more than ‘just a headache’, migraine affects the whole body and can result in many symptoms. Often people experience an intense throbbing headache which may affect one […]
A Ketamine Revolution For Depression And Pain ? Spravato, Fibromyalgia And ME/CFS
By Cort Johnson in Health Rising. For years, ketamine was known for its use as an anesthetic or as a recreational drug. It had the nice benefit of being able to knock one out without impacting heart rate or breathing. Its ability to provide quick and safe sedation saved many lives during the Vietnam […]
Easter: eggs, hares, lamb and the return of warmth and sunshine – a Christian festival that feels pagan
By Jane Stevenson in The Conversation. There’s a lot of confusion about Easter – not least because this most important of all Christian festivals moves around so much from year to year, decided by a complex set of calculations based on the vernal equinox and the phase of the moon. Easter symbols – […]
Listen To ME
Listen To ME Good morning television My company for the day I hope you haven’t missed me While I’ve been away I’ve been in bed, not well you see There’s a big long word But we call it M.E. Used to be out there Working and doing ‘stuff’ Then one day, whilst […]
Controversial Housing Scheme For York Playing Fields Set For Green Light
By Chloe Laversuch in YorkMix. Controversial plans for 69 new affordable homes on playing fields around the David Lloyd gym look set to get the go-ahead – despite objections from neighbours. The scheme would see houses built on land off Windmill Lane formerly owned by York St John University. Council planning bosses […]
User-Led Advice Centre Set To Close Its Doors After NHS Funding Blow
By John Pring in Disability News Service. A disabled people’s organisation is set to have to close the doors of its advice centre, which has provided vital support with benefit claims to thousands of disabled people, after nearly all its funding was suddenly withdrawn by a local NHS body. Possability People has been running […]
David Tuller On Exposing The Bad Science Behind The Biopsychosocial Effort To Define ME/CFS
By Cort Johnson in Health Rising. David Tuller is a unique figure in the ME/CFS universe. A reporter and editor for the San Francisco Chronicle, Salon and writer for the New York Times, the policy journal Health Affairs, and other publications, Tuller became outraged at the long history of neglect and abuse directed toward ME/CFS. His publications […]
When You Can’t Stop Mourning The Person You Were Before Chronic Illness
By Jamie Janinski in The Mighty. Four years ago, I went to my doctor complaining of excessive tiredness and having so much pain in my hands that I couldn’t squeeze my shampoo bottle while showering. Four years ago, I received a call telling me I needed to see a rheumatologist right away because my […]
Airline Forced To Apologise After Charging Woman For Carer’s Seat Reservation
By John Pring in Disability News Service. An airline has been forced to apologise to a disabled woman after it charged her extra to reserve a seat next to her for her carer, and then refused to refund the charge. Helen Jenkins had informed Flybe when she was booking her return flights […]
Travelling Abroad With M.E.
By Jane Shaw in M.E. Support. Introduction I am writing this in October 2018, and most people have had their holidays for this year and might be thinking of where to go next year, if they haven’t been put off by Brexit scares and uncertainties. Travelling abroad is fun for most people, but […]
The York ME TGA Shield – Inter Company Fantasy Football League
The York ME Community runs an Inter-Company Fantasy Football League sponsored by TGA Mobility. This is to help raise awareness of the illness that affects around 250,00 people in the UK, and 800 in the York area alone. The B Team of Bransby Wilson are looking strong favourites to win the league this season, […]
Inside I’m Dancing
By Chloe Leanne Brooks in ME Support. I used to live by the motto “Don’t wait for the storm to pass, learn to dance in the rain” – but unfortunately, in my life this is no longer the case. My life is stormy. I can’t dance through this pain and heartache any more because […]
Calls For York River Safety Review After Three Tragedies In Just Days
By Chloe Laversuch in The Press. AN MP has called for a review of river safety in York after three people tragically lost their lives in eight days. And the mum of a young woman who died in the Ouse five years ago has also appealed for a fresh campaign to raise awareness […]
Trial By Error: Crowdfunding, Week 2; And More Sharpe And Chalder
By David Tuller, DrPH As of this post, I have achieved 57% of my goal, with 542 donations and 15 days left to go. I think that’s pretty good! I’m optimistic about getting reasonably close to the amount I’m trying to raise. Folks at Berkeley certainly notice the success of my crowdfunding. It […]
12 Things That Happen When You Have A Chronic Illness
By Ally Teixeira in The Mighty. Having a chronic illness isn’t easy. All of us chronically ill warriors may feel alone, but we all have a lot in common! Here are 12 things that happen when you’re chronically ill. You know you have a chronic illness when… 1. Doing your hair feels like some serious […]
The Never-Ending Challenge Of Dealing With Post-Exertional Malaise (PEM)
From Not Just Tired. After a good day, or a spell of feeling pretty ok, it’s always a kick in the teeth when Post-Exertional Malaise (PEM) catches up with you. As I’m sure those of you living with ME/CFS, will be all too familiar with. For those not familiar, PEM is the worsening […]
Activated Charcoal Doesn’t Detox The Body – Four Reasons You Should Avoid It
By Sophie Medlin in The Conversation. On her Goop website, Gwyneth Paltrow claimed that charcoal lemonade was one of the “best juice cleansers”. That was in 2014. Today, charcoal products – from croissants to capsules – are everywhere. Even high street coffee chains have taken to selling charcoal “shots”. Some vendors of these products […]
Care For Someone With Severe Myalgic Encephalomyelitis
By Greg Crowhurst in M.E. Support. Linda, my wife, collapsed over two decades ago and very quickly became bed bound. In the months leading up to her collapse, she had had several operations and a long chest infection. For almost two years prior to that she was in constant pain, experiencing severe pins […]
Opioid Painkillers: Doctors Urged To Be More Vigilant With Prescriptions – This Is Why
By Rachel Moss in Huffpost. The amount of opioids doctors are prescribing patients has significantly increased over the past decade, potentially contributing to the rise of opioid misuse and addiction, new research suggests. Worldwide, the use of prescription opioid painkillers more than doubled between 2001 and 2013. The researchers said in some […]
Toxic Masculinity Made My ME Much More Punishing
By Jack Croxall in #MEAction. I came to on the floor of a supermarket in an affluent London borough. I was staring up at a paneled ceiling, half-blinded by piercing white lights. After a groggy moment of confusion, panic set in. I leapt up, finding myself in the middle of a queue […]
Prescription Drugs Pregabalin And Gabapentin Have Been Reclassified – But It Won’t Stop Problem Use
By Ian Hamilton and Harry Sumnall in The Conversation. Gabapentin and pregabalin, two widely used prescription drugs, are now subject to increased controls in the UK, which means they are now reclassified as class C controlled substances. These drugs are licensed to treat epilepsy, anxiety, peripheral and neuropathic pain (pain caused by damage or […]
Broken Mitochondria Use ‘Eat Me’ Proteins To Summon Their Executioners
From Eureka Alert. When mitochondria become damaged, they avoid causing further problems by signaling cellular proteins to degrade them. In a paper publishing April 11, 2019, in the journal Developmental Cell, scientists in Norway report that they have discovered how the cells trigger this process, which is called mitophagy. In cells with broken mitochondria, […]
East African Disease Informs Nath’s Search For The Cause Of ME/CFS
By Cort Johnson in Simmaron Research. Could a disease found in the remote villages of East Africa end up being a model for chronic fatigue syndrome (ME/CFS)? Dr. Avindra Nath – the leader of the NIH Intramural study on ME/CFS – thinks perhaps so. He’s not daunted by mysterious diseases and nor […]
Do You Really Believe In ME ?
From The Royal College Of Physicians. With many in the medical profession misunderstanding ME, Dr Nina Muirhead recounts her own experience with the illness and how it reshaped her understanding of it. Many doctors can find themselves in the position of the patient, and being informed of one’s own diagnosis can be […]
Magical York
From Visit York. With a history spanning 2,000 years, there’s no surprise that myths and magic are in abundance in the city of York. Throughout the centuries characters from alchemists to witches are said to have passed through the city. Find out about York’s magical connections from past to present. The city’s […]
‘Angel’ Investor Seeks Entrepreneurs To Transform Life For Disabled People
By John Pring in Disability News Service. Disabled entrepreneurs with technology-based business ideas that could transform life for other disabled people have a chance to secure up to £100,000 of funding through an “angel” investment programme. Entrepreneur and investor Rohan Silva, a former senior policy adviser to Conservative prime minister David Cameron, […]
UFO Lands In Poppleton! Residents Are Wired Up To York’s Superfast Broadband
From YorkMix. The superfast UFO from TalkTalk is on track to transform York into the UK’s first Ultra Fibre Optic city as it ramps up its full fibre roll-out programme. It has just brought gigabit broadband speeds (1000 Mbps) to residents in Poppleton for the first time. The full fibre network now spans […]
Reeducating Doctors About ME/CFS
By Dr David Tuller. Steven Olson, MD, a 1984 graduate of the UC Davis School of Medicine, practices family medicine at Kaiser Permanente in Santa Rosa, Calif. He also serves as the Permanente Medical Group’s regional physician director for Northern California, an area that includes some 4.5 million members. Among his responsibilities is to oversee […]
Return On Investment II: David Tuller
By Jennie Spotila in Occupy M.E. Last year, I fully endorsed Dr. David Tuller’s crowdfunding appeal in support of his investigative reporting on ME. This year, I am happy to endorse Tuller’s fundraising once again. The progress report that accompanies Dr. Tuller’s fundraising request (and also posted on Virology blog) details his research, writing and publications during the last year. […]
ME Affects Four Times More Women Than Men – Dismissing This Terrifying Illness Is Sexist
By Josie Richardson in Huffpost. Like Victorian women being branded ‘hysterical’, women like my best friend are being silenced. “ME, that’s the one where you don’t feel like going to work today,” Ricky Gervais once quipped on-stage. He voices a common feeling. I have heard someone casually proclaim that they must have […]
IIMEC14 – The Anne Örtegren Memorial Lecture 2019
From Invest in ME Research. IIMEC14 is the fourteenth annual international ME conference that the charity has organised in London. For many of those years the charity often communicated with a patient/advocate in Sweden – someone we are proud to have called our friend. Anne Örtegren passed away in January 2018. […]
Pictured: York’s New Post Office, inside WH Smith
From YorkMix. The business moved out of its purpose-built home on Lendal after 135 years – and into a corner of the Coney Street WH Smith. It comes with five serving positions and four self-service kiosks. The relocation caused controversy, with more than 3,000 signing a petition against the idea. However, the […]
Cutting Disability Services Doesn’t Save Money. But It Does Damage Lives
By Frances Ryan in The Guardian. In times of deep inequality and shrinking services, politics is often framed like a David and Goliath battle. You see it in the mothers who this week challenged the London developers trying to stop their “social housing kids” playing in segregated play areas. Or the teachers and parents in Cambridge marching against […]
About Ian Rudd
From All About M.E. My cousin Ian Rudd died in April 2018. Paramedics were called in the early morning and were unable to resuscitate him. This is an edited version of a blog I wrote for severe ME Day in 2015 while Ian was still alive. He suffered from a cruel disease called […]
Time For Unrest: Why Patients With ME Are Demanding Justice.
