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.
Why We Shouldn’t Test Our Physical Limits To Make Others Feel More Comfortable
By Heidi in The Mighty. Whenever I am scrolling through chronic illness forums online, I usually come across posts about mobility aids. Having postural orthostatic tachycardia syndrome, or POTS, I understand what it feels like to use mobility aids in public without an obvious physical disability. “But you don’t look sick.” “Are you […]
SEID Is Killing ME
From ME Advocacy. Advocating in the United States for the disease myalgic encephalomyelitis (ME) has reached a new challenge that threatens the very core of the recognition for the disease. While some advocacy organizations have diverged and taken the alarming path of partnering with the US Health and Human Services (HHS) in adopting, […]
Song For The Millions Missing
I was just reminded of this song put together for Millions Missing as part of an album. Still around on YouTube. Link to Missing Millions ME And Me Song
The Myhill Mitochondrial Test And ME/CFS Studies Take A Hit
By Cort Johnson in Health Rising. The ATP Profiles test developed by Dr John McLaren-Howard (and the Mitochondrial Energy Score developed from it) has been a big deal for the chronic fatigue syndrome (ME/CFS) community. The test formed the basis for studies dating back to 2009 by Dr. Myhill, Dr. McLaren and Dr. Booth which asserted […]
Advocating For ME-ICC In Washington, DC
From ME Advocacy. It has been 50 years since the World Health Organization classified myalgic encephalomyelitis (ME) as a neurological disease in 1969. Thirty plus years of misinformation about the harsh reality ME patients face has led to a crisis of grossly inadequate patient care. For decades patients have dealt with doctors […]
Ministers Push Ahead With Single Face-To-Face Assessments For Disability Benefits
By John Pring in Disability News Service. Ministers are pushing ahead with controversial plans to merge two disability benefit assessments into one, despite concerns raised by disabled campaigners. The Department for Work and Pensions (DWP) wants to offer a single face-to-face assessment – with the agreement of the claimant – that would […]
M.E. Information
From ME Support. What is M.E.? The most frequently asked questions form this resource, which doubles as a useful information sheet to download. Myalgic “my-AL-jik” means muscle pain. Encephalomyelitis “en-SEF-uh-lo-MY-uh-LY-tis” means inflammation of the brain and spinal cord. A Short History of M.E. An insight into the history of this debilitating condition and the efforts […]
How Accessible Is The Beauty World To Those With Disabilities ?
By Amelia Abraham in Dazed Digital. DISABILITY CAMPAIGNER SAM RENKE, BEAUTY YOUTUBER KAITLYN DOBROW, AND THE CHARITY SCOPE SHARE THEIR THOUGHTS ON HOW THE INDUSTRY CAN DO BETTER For Sam Renke, who has osteogenesis imperfecta, also known as brittle bones disease, make-up is not a mask but a way to express herself. “Fashion and beauty […]
Scandic Hotels Introduces Standard For Fragrance-Free Allergy-Friendly Rooms
From Fragrance Sensitivity Australia. Scandic Hotels, which has hotels in Sweden, Finland, Denmark, Norway, Germany, Poland, is the first hotel chain in the world to introduce a standard for allergy-friendly rooms. This means that guests booking allergy-friendly rooms can expect rooms prepared according to strict cleaning procedures and fragrance-free, hypoallergenic toiletries approved by the Swedish […]
Fibromyalgia And Chronic Fatigue Syndrome: The Gap Widens
By Cort Johnson in Health Rising. The similarities are striking: the symptoms, the shoddy research funding, the poor treatment from doctors, the gender imbalance and the stigma both still face. Both diseases still really exist on the fringes of medicine and medical research. Yet one disease is moving forward rapidly and the other […]
My Disabled Body Is Not A ‘Burden.’ Inaccessibility Is
By Aryanna Falkner in Healthline. I discovered my love for literature and creative writing during my senior year of high school in Mr. C’s AP English class. It was the only class I could physically attend, and even then, I usually only made it once a week — sometimes less. I used […]
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 on […]
‘But You Don’t Look Sick’: Living With An Invisible Disability
By Nicole Precel in The Sydney Morning Herald. When Rebecca Young parks her car in a disabled parking spot she often feels the searing stares. Is she driving her grandparents’ car? Why does she have a disability sticker when she is aged in her 30s and appears to walk perfectly well? Ms […]
Parents And Children Missing From Their Lives Due To M.E.
From #MEAction. Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. Parents with ME are missing precious days and years with their children due to the disease, and parents of children with ME are fighting to provide care for their sick children in a world where there is […]
Legal Firm Hands Out Cameras To Help Disabled Passengers Prove Discrimination
By John Pring in Disability News Service. Disabled people who experience repeated discrimination on public transport are being offered a camera to record video evidence for possible legal cases. Legal firm Fry Law, which specialises in disability discrimination cases, is hoping some of the evidence produced can then be used to bring cases […]
Architect Anthony Clarke’s Designs For ME
by Anthony Clarke in ME News Australia. Anthony Clarke of BLOXAS, an architecture practice for empathic and experimental architecture, was contacted by a South Australian woman with ME to design a home for her. His research led him to a screening of ‘Unrest’ and a friendship with Anna Kerr, who also has ME. […]
My Story
From Mummying and M.E. I used to be healthy (ish!) Full of energy. I used to think nothing of working a 10+ hour day, 5 days a week, going to a 2-hour rehearsal twice a week after work, and most other nights going for a drink or 2 at the local. Weekends were spent […]
ME, I’ve Never Looked Better
ME, I’ve Never Looked Better Just the other day A friend just happened to say My, you’re looking well He’d forgotten about the ME hell We’d not seen each other for a while So when he said it, I gave a smile He meant it as a friendly greeting The thing you say, when […]
Why Friendships Can Be Difficult With A Chronic Illness
By Jo Moss in The Mighty. There is a saying that goes, “It’s amazing how chronic illness turns friends into strangers and strangers into friends.” Maintaining friendships can be difficult for those of us with chronic illness. It may be hard for friends to understand the challenges we face, and the limitations our ill-health places on […]
Rituximab For Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Fail
From Questioning Answers. B-cell depletion using several infusions of rituximab over 12 months was not associated with clinical improvement in patients with ME/CFS [Myalgic Encephalomyelitis/Chronic Fatigue Syndrome].” That was the conclusion reached in the paper by Øystein Fluge and colleagues [1]. Their findings based on the use of rituximab, “a drug that is often used to treat inflammatory diseases (for […]
The Never-Ending Challenge Of Dealing With Post-Exertional Malaise (PEM)
From the Not Just Tired Blog. 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 […]
Molecules May Convert Acute Infection Into ME
By Sasha Nimmo in ME Australia. A paper published in Metabolic Brain Disease by Morris, Maes, Burk and Puri suggests Myalgic Encephalomyelitis develops because of genes responsible for immune responses. Their paper discusses how molecules may convert an acute infection into a state of escalating chronic systemic inflammation. Morris and Maes have written extensively […]
Disability Hate Crime: Number Of Reports Rising
From BBC News. Shocking but not surprising is how one campaigner has described a rise in disability hate crimes. Research by learning disability charity United Response found there were more than 6,000 reported cases in 2018-19, a rise of just under 12% in a year. The police force area with the largest number was West […]
The Claim That The Cure For The Crippling Fatigue Of ME/CFS Was To Change Your Mind Always Seemed Bizarre. Now It Really Is On The Way Out…
By Jerome Burne in Health Insight UK. In September 2016 I posted a blog here about a research bombshell that had just exploded at the heart of one of the most bitter disputes in medicine – how best to treat a condition known as ME/CFS that involves relentless fatigue. A team of […]
Social Services Can Threaten Families Of Children With Chronic Fatigue
By Natasha Wynarczyk in Vice. Myalgic encephalomyelitis, or ME, is little understood by the general public. That lands some parents in the firing line. Angus Rodwell was an energetic, playful child from Suffolk, UK. Then,at the age of eight, he fell ill with a series of viral infections. Five years on, the 14-year-old […]
Unsolicited Health Advice Is Intrusive & Invalidating – Please Stop
By Jo Moss in A Journey Through The Fog. Everyone living with a chronic illness has had to deal with unsolicited advice about their health. Whether it’s from strangers on social media or from well-meaning friends and family, uninvited advice is a frustrating part of living with an incurable chronic illness. It’s […]
Chronic Inflammation Removes Motivation By Reducing Dopamine In The Brain
By Dr. Liji Thomas, MD in News Medical Life Sciences. Why do we feel listless when we are recovering from an illness? The answer is, apparently, that low-grade chronic inflammation interferes with the dopaminergic signaling system in the brain that motivates us to do things. This was reported in a new paper published in […]
Interview With Dr Nina Muirhead
From ME Support In Glamorgan. Dr Nina Muirhead is a dermatologic surgeon at the NHS who is married and has two children. Anyone hearing this information may think that everything is going well with her. In fact, she has been suffering from a disease called Myalgic Encephalomyelitis (ME), commonly known as Chronic […]
Pavement Parking In Fulford
More Pavement Parking being reported. This at the bottom of Heslington Lane in Fulford, at a very busy junction, making things very dangerous for those in wheelchairs etc. Reported to local police.
The Cure For Toxic Positivity
By Rebecca Renner in Forge. When my dad was diagnosed with colon cancer at age 52, I was flooded with emails, calls, and in-person pep talks from friends and acquaintances. Anyone who’d ever met me, it seemed, was eager to offer up a platitude. “Think positive,” they told me. “It will be okay. […]
David Tuller On Exposing The Bad Science Behind The Biopsychosocial Effort To Define ME/CFS
By Cort Johnson in Health Rising. “…many of these people spout nonsense and then freak out when confronted with facts or details about the research that they can’t explain away.” David Tuller David Tuller is a unique figure in the ME/CFS universe. A reporter and editor for the San Francisco Chronicle, Salon and […]
Teen Housebound By ME Threatened Wiith Fine By School For Being ‘Truant’ – Now Benefits Assessor Says She’s Not In Enough Pain
By Claudia Tanner in iNews. Georgia Whyard claims teachers said she had ‘school phobia’ despite having an official diagnosis of myalgic encephalomyelitis In brief The once A* pupil suffers pain, extreme exhaustion, and migraines Mother says she was branded ‘school phobic’ due to poor attendance Department for Work and Pensions ruled she is not […]
Rocket In Brass, Steel And Fire
From Visit York. About Behold the single most important object in the modern age and meet the humble makers who built the modern world from their kitchen tables, in Brass, Steel and Fire at National Railway Museum. Meet Rocket, the world-changing locomotive which kick started a golden era of innovation. Journey through […]
18 Myths & Misconceptions Of Post-Exertional Malaise #PEM In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS
By Dr Mark Guthridge in Thread Reader. #PEM (aka PENE, “flare” or “crash”) is seriously debilitating symptom caused by exercise #SickNotWeak #SickNotTired #pwME #chronicillness #medtwitter #MedEd 1. #PEM is just tiredness No #pwME experience <pathological> fatigue after #exercise which can be long-lasting and includes debilitating fatigue, flu-like symptoms, cognitive impairment, #sleep disturbance To read the rest of this story, click on the link below: Link […]
Time For Unrest: Why Patients With ME Are Demanding Justice.
