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.
Smartphones Are Introducing Tech That Makes The World More Accessible For People With Disabilities
By Erin Magner in Well and Good. It’s easy to throw shade at smartphones for all the ways they suck us in, burn us out, and keep us up at night. But let’s not forget that our constant computerized companions have many qualities worth celebrating, too. For starters, they’re helping to make life easier for people with disabilities. […]
Scope Accused Of ‘Exploitation’ After Seeking Disabled Writer To Work For Free
By John Pring in Disability News Service. A disability charity has been accused of “exploitative” and “disgraceful” behaviour after asking disabled journalists to write an article for its website without payment. The charity Scope sent out a message on social media this week seeking a “disability blogger” who could write an article […]
Developing Chronic Fatigue Taught Me To Live In The Moment
By Chloe Cooper in Voices. In early January 2019, I was doing what I do every year – reviewing my achievements of the past 12 months and setting my goals for the year to come. Like countless others who go through the same process, this felt like an essential step to becoming the […]
Mayo Clinic Research Discovers A Molecular Switch For Repairing Central Nervous System Disorders
From The Mayo Clinic. ROCHESTER, Minn. — A molecular switch has the ability to turn on a substance in animals that repairs neurological damage in disorders such as multiple sclerosis (MS), Mayo Clinic researchers discovered. The early research in animal models could advance an already approved Food and Drug Administration therapy and also could lead to […]
30 Years Beyond Comprehension
From A Life Hidden. Today is the 30th anniversary of the day I became ill. How surreal those words sound, even after three decades spent adjusting to them. My illness now accounts for three quarters of my life: a span of time so vast that it defies comprehension. When I fell ill as […]
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 do, wanna […]
The Hollow Man
By Andrew O’Connor in ABC News. The catastrophic collapse of Tony Wallace’s life began slowly and silently. An episode of flu. A persistent illness. A feeling of fatigue. A sense something was not so much wrong, as not quite right. Over time, his ambiguous symptoms have morphed into a condition that defies medical […]
Stop Assuming I’m Not Disabled Just Because I Don’t “Look Disabled”
By Rachel Carrington in Rooted in Rights. I park my car in a parking space reserved for those with disabilities. My door is barely open before I’m confronted by a woman who demands to see my handicap parking placard. Her mother is disabled, and she needs the space. I point her toward my […]
When The Triggers For Your Illness Are Constantly Changing
By Lisa Alioto in The Mighty. For the past six years I have lived with myalgic encephalomyelitis (ME). It’s a multi-system disease that affects the neurological, endocrine, immune and energy metabolism systems. Its hallmark symptom is post-exertional malaise (PEM). PEM is a reduction in functioning and a severe worsening of symptoms after even minimal exertion. […]
Immune Cell Metabolism Altered In ME/CFS
From NIH Research Matters. ME/CFS is a complex, poorly understood disease. Symptoms can include fatigue, chronic pain, problems thinking and concentrating, poor sleep, and gut problems. These symptoms often worsen after physical or mental activity that wouldn’t have caused a problem before the illness. This is known as post-exertional malaise. About a quarter of […]
How I know ME/CFS* Is A Physical Illness
By Una Hearne. Introduction I am writing this to put a final nail in the coffin of the idea that ME/CFS is a psychosomatic issue; that it is ‘all in the mind’. Having both the physical illness ME/CFS (from age 16) and the mental illness Depression (since birth), I am in a […]
New Government Provides Details On Five Disability Policy Pledges
By John Pring in Disability News Service. The new Conservative government has described how it plans to fulfil the five major disability policy pledges it included in its general election manifesto. The details were included in a briefing document published alongside last month’s Queen’s speech by prime minister Boris Johnson. They cover social care, a […]
We Celebrate The Life And Legacy Of A Warrior For ME
From #MEAction. It is with heavy hearts that we share the passing of ME community advocate, Cindy Siegel Shepler. Cindy lived with myalgic encephalomyelitis (ME) and multiple other health issues. She dedicated much of her increasingly limited time and energy to advocacy, increased awareness, and increasing research funds for ME. She had a […]
Popular York Restaurant To Take Over City Centre Shop
By Chloe Laversuch in YorkMix. A popular city centre restaurant is set to expand into a neighbouring shop. Ate O’Clock on High Ousegate has applied for planning permission to take over the former Joy store next door to its entrance. If the proposals go ahead, the company would create a new deli shop […]
A Blue Badge And Invisible ME
Gone from being life and soul Health gone down a huge black hole Rarely getting out too far Too much pain is the bar A blue badge now has rescued me When strength allows, it sets me free It gets me to a needed door Which was out of my aching reach before […]
Trial By Error: Shaky Evidence For Signs Of Functional Neurological Disorders
By David Tuller, DrPH One of my goals next year is to write more about so-called “medically unexplained symptoms,” also known as MUS. The term MUS might be useful as a descriptive name for the large category of phenomena that lack a proven pathophysiological pathway. But in the medical literature, and in the minds […]
Book Exposes ‘Horrifying’ Levels Of Abuse Faced By Disabled People On Public Transport
By John Pring in Disability News Service. A new book by a disabled researcher has detailed the “horrifying” levels of disability hate crime that take place every day on public transport across the UK. David Wilkin says the results of his research are “sometimes startling and almost always distressing” and illustrate the “ongoing […]
“Something Completely Different”: Ian Lipkin Talks At The CDC On ME/CFS
By Cort Johnson in Health Rising. The talk was titled, “Now for Something Completely Different: A microbe hunter turns to ME/CFS”. Except that Ian Lipkin is not just any microbe hunter: for many people, he’s THE microbe hunter. Internationally known for his breakthrough work on Bornavirus, SARS, MERS, tick-borne illnesses, and others, and his […]
5 Tips For Making Your Christmas Party Accessible
By Kerry Thompson in AccessAble. Disability blogger and campaigner Kerry Thompson, who has Muscular Dystrophy and uses a wheelchair, gives us her top 5 tips for making Christmas parties accessible. December is here! The shops are filled with Christmas Trees and decorations, the bars and restaurants are advertising booking Christmas parties, it’s a […]
Living With An Unsociable Illness
From the Not Just Tired Blog. As I’m writing this post, I’m sat in bed, having to take time out to rest, whilst we have a family member staying with us for the weekend. Enjoying listening from afar to the lively chatter, yet not a part of it. Would I not rather be downstairs, […]
BMJ Should Retract Flawed Research Paper On Chronic Fatigue Syndrome
By David Tuller in Statnews.com. Few journals have been more admirable than The BMJ (formerly the British Medical Journal) and some of its sister publications under the BMJ brand in highlighting issues of direct significance to health care consumers. So it is baffling — and troubling — when BMJ editors fail to […]
Latest From Ron Davis: More Evidence Of “Something In The Blood”
By Simon McGrath in ME/CFS Research Review. Dr Ron Davis recently revealed more evidence supporting the idea that there could be “something in the blood” that drives ME/CFS. He’s been on a tour of the US East Coast, winning over scientists and clinicians, one lecture hall at a time. Open Medicine Foundation has […]
Lewisham Commission Hopes To Put Disabled People At Heart Of Decision-Making
By John Pring in Disability News Service. A local authority has become the second in London to set up an independent, user-led commission to investigate the barriers faced by disabled residents. Lewisham Disabled People’s Commission (LDPC) will be led by disabled people and will examine organisational, attitudinal and physical barriers faced by disabled […]
Older People Need To Stay Hydrated – Here’s How
By Cini Bhanu in The Conversation. Dehydration is associated with a higher risk of ill health in older people, from having an infection, a fall or being admitted to hospital. But an appetite for food and drink can diminish as people age, so older people should drink regularly, even when they’re not thirsty. Older women […]
Study Finds Differences In Energy Use By Immune Cells In ME/CFS
From The National Institutes Of Health. New findings published in the Journal of Clinical Investigation suggest that specific immune T cells from people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) show disruptions in the way they produce energy. The research was supported by the National Institutes of Health. “This research gives us additional evidence […]
Poor Oxygen Extraction Is Contributing To Exercise Intolerance In Chronic Fatigue Syndrome (ME/CFS)
By Cort Johnson in Health Rising. David Systrom, a Harvard pulmonologist, uses invasive CPET tests to find that oxygen extraction problems at the muscle level are common in ME/CFS. Chronic fatigue syndrome (ME/CFS) has a reputation for falling through the cracks. Test after test is run to no avail. From the […]
Nanoneedle Update: Finding What’s In The Blood
By Janet Dafoe in Phoenix Rising. There are a lot of various threads and tweets about this so I asked Ron to clarify where the research is at and what the plans are. As for everything else, this has gone a lot slower than it could have if he’d had more funding. The […]
Natural Born Killers
From ME Research UK. Despite their dramatic name, natural killer (NK) cells are actually a very important part of our immune system and help protect us from viruses by killing cells that have been infected. They can also target tumour cells. There is evidence to suggest that the cytotoxicity of NK cells (that […]
Tips On How To Survive The Festive Season
By Jo Moss in A Journey Through The Fog. Christmas can be a particularly hard time of year for people living with chronic ill-health. It can be a mental and physical strain, filled with potential pitfalls. I have to admit I’ve never been a Christmassy person. We (my family) didn’t celebrate Christmas when […]
Metaphors And ME
Metaphors And ME Explaining what ME is like Is really pretty tough We want to keep it simple But it’s more than feeling rough We could start the list of symptoms But you’d find them a bit of a bore So those of us in the ME club Like a nifty metaphor The […]
Resting When Tired Isn’t Lazy – It’s Self Care
By Jo Moss in A Journey Through The Fog. Since my heart procedure 2 weeks ago, it feels like I’ve done nothing but sleep. I know I should be thankful my poor, exhausted body is finally letting me rest, but I’m struggling with the notion that I’m just “being lazy” and the […]
What “Phantom Nasal Congestion” May Tell Us About ME/CFS And Fibromyalgia
By Cort Johnson in Health Rising. When you have a systemic disease, any part of your body can provide a clue – even your nose. Over 15 years from 1998 to 2012, James Baraniuk, a longtime ME/CFS and GWI researcher at Georgetown University, became the first and thus far the last person […]
Trial By Error: Fiona Godlee Doubles Down On Lightning Process Study
By David Tuller, DrPH. Earlier this week, Dr Fiona Godlee, editorial director of BMJ, e-mailed me in response to concerns expressed about the study of the Lightning Process published in Archives of Disease in Childhood, one of the journals under her purview. Those concerns were expressed in an open letter to her […]
Christchurch Chronic Fatigue Syndrome Sufferer Told It Was All In Her Head
By Oliver Lewis in stuff.co.nz. An estimated 16,000 to 20,000 people in New Zealand have chronic fatigue syndrome. Despite this, the debilitating condition remains poorly understood. OLIVER LEWIS reports. Gillian Watson calls it the year she forgot. The Christchurch woman was struck down with flu in the latter half of 2015 and never really […]
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Time For Unrest: Why Patients With ME Are Demanding Justice.
