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.
Hello, Is It Me You’re Looking For ?
HELLO, IS IT ME YOU’RE LOOKING FOR ? I’m sure you know the feeling I’m sure you know the score Hit with ME, you soon get to see How things are not as before I hoped my friends would stay with me I seriously thought they would I thought that they’d care And […]
Dr Byron Hyde ME Expert
By Wendy Boutilier in Global Advocates 4 Myalgic Encephalomyelitis. Dr. Byron Marshall Hyde studied pre-medicine in the Faculty of Medicine, University of Toronto followed by a degree in Chemistry and Nutrition in 1961. His first medical employment was as an immunological research chemist at the Roscoe B. Jackson Laboratory, Bar Harbor, Maine – a leading […]
Chronic Fatigue Syndrome: Gradually Figuring Out What’s Wrong
By Anthony Komaroff, MD in Harvard Health Publishing. In 1983, a health professional in her 30s walked into my office and said, “I’ve been healthy all of my life. A year ago, I came down with some kind of virus — sore throat, aching muscles, swollen lymph glands, fever. My fatigue was so bad […]
After Long-Awaited Recognition, Serious Research Begins On Chronic Fatigue Syndrome
By Vik Adhopia – CBC News. A network of Canadian scientists is trying to make up for lost time in the search for a standard diagnostic test and treatment for a debilitating, poorly understood disease that had long been dismissed as a psychological illness. Myalgic encephalomyelitis ― commonly known as chronic fatigue syndrome (ME/CFS) ― is […]
Challenging Insensitive Comments And “Who Has It Worse” Competitions
By Jo Moss in A Journey Through The Fog. “Life is not a competition. Life is about helping and inspiring others so we can each reach our potential.” Does anyone else feel like they have to bite their tongue a lot? Do you hide a lot of what you are feeling because confrontations […]
Getting At The Hurt In Chronic Pain
By Cort Johnson in Health Rising. Pain – A Surprisingly Complex Experience Pain seems pretty elementary – it hurts! When it really hurts, you want to throw yourself out of your skin. It’s actually not so simple. Pain is often described as a complex, “biopsychosocial phenomenon“. The International Association for the Study […]
I Shouldn’t Have To Legitimize My Pain For Others To Believe Me
By Claire Brumback in The Mighty. “Why doesn’t anyone believe me?” I ask myself this question too often. I have chronic pain and suffer with it every day, but no one believes me. On days I can’t get out of bed, or days I go to the ER because the pain is unbearable, […]
Neuroendocrine Dysfunctions in Prolonged Critical Illness: Relevance for Chronic Fatigue Syndrome ME/CFS and Fibromyalgia Pt. I
By Dominic Stanculescu in Health Rising. Summary Prolonged or chronic critical illness – a term applied to patients that survive severe injury or infection, but fail to start recovering after a few days – is characterized by low levels of peripheral hormones (including T3, IGF-1, cortisol and testosterone). This pattern is increasingly recognized as a neuroendocrine dysfunction […]
Doctor Lapp’s Amazing Chronic Fatigue Syndrome Disability Letter
From How To Get On. Doctor Lapp is a well-respected and much-beloved doctor in North Carolina who specialized in ME and CFS who is excellent at documenting this condition. Sadly, Doctor Lapp is now retiring and no longer accepting new patients. Happily, one of his patients was kind enough to share her […]
‘I’m Only Here For MY Beer !’ Dame Judi Dench Knocks Back A Can Of – Dame Judi Quench
From YorkMix. After a hard day’s filming, there’s nothing better than cracking open a can of beer with your name on it. Hollywood and theatre legend Dame Judi Dench is pictured here tucking into a cold can of Dame Judi Quench – the unique beer created in her home city by Brew […]
Researchers discover potential therapeutic approach to treat ME / CFS
By Carley Rosengreen in Griffith News. Researchers have discovered the pharmacological drug, Naltrexone, significantly restored the function of faulty receptors associated with myalgic encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS). Researchers from the National Centre for Neuroimmunology and Emerging Diseases (NCNED), Menzies Health Institute Queensland, Griffith University led the research, which has been published in Frontiers in Immunology. […]
Rethinking The Standard Of Care For Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
By Fred Friedberg, Madison Sunnquist and Luis Nacu in Springer. For over two decades, the standard of care for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been cognitive behavior therapy (CBT) and graded exercise therapy (GET). Both interventions had been recommended by the US Centers for Disease Control and the UK NICE guidelines.1 Behavioral intervention as the clinical standard […]
Brain Studies Show Chronic Fatigue Syndrome And Gulf War Illness Are Distinct Conditions
By Karen Teber in Georgetown University Medical Center News. Gulf War Illness (GWI) and chronic fatigue syndrome (CFS) share symptoms of disabling fatigue, pain, systemic hyperalgesia (tenderness), negative emotion, sleep and cognitive dysfunction that are made worse after mild exertion (postexertional malaise). Now, neuroscientists at Georgetown University Medical Center have evidence, derived […]
7 Ways To Survive A Flare When You’re Chronically Ill
By Toni Bernhard J.D. in Turning Straw Into Gold. Part of living day-to-day with chronic illness (which includes chronic pain) is learning to cope with a flare in symptoms. Even though my parade of symptoms tend to be relentlessly the same, at times they flare and can even feel out of control. Here are […]
The Best Analogy To Explain ‘Energy Debt’ With Chronic Illness
By Teresa Ledwith in The Mighty. The other day I was struggling, as many of us with chronic illness do, to explain myself to a friend. As usual, I had to give up. I can’t explain to her why it’s not easy for me to drive in and out of my nearest city (an […]
Four In Five Disabled People Feel Anxious About Using Public Transport, Says Study
By Cathy Adams in The Independent. Four in five disabled people have felt anxious about using public transport, according to a wide-ranging new study about disability and travel, while three in five have felt scared. Research from equality charity Scope shows that the majority of disabled people face problems when using public transport, with […]
ME And Me: Making Films About Disability To Raise Awareness
From Disability Horizons. Disabled writer and actor Thom Jackson-Wood, who has ME, talks to Disability Horizons about his films, Awaken and The Black Box, both of which are about disability. Written after frustrations at disabled people being misrepresented on TV, he hopes the films will raise awareness of different disabilities, and […]
From Infectious Disease Specialist To ME/CFS Expert: Dr. Bela Chedda Talks
By Cort Johnson in Health Rising. I met Dr. Chheda of the Center for Complex Diseases at Ron Davis’s Working Group Meetings funded by the Open Medicine Foundation. She graciously agreed to talk more about how she approaches treating ME/CFS in her practice. I was particularly eager to talk to one of the younger […]
The Unknown Warrior
The Unknown Warrior November 7th was the day Four bodies taken from where they lay All exhumed from their battlefield grave Just four of the many warriors brave The soldiers digging not told why Their comrades were not left to lie The fallen four with names unknown Then taken from the combat zone […]
Bold Plans For Two Big Biomedical Research Projects
By Simon McGrath in ME/CFS Research Review. A new research team is hoping to boost UK biomedical research with a proposal for a very large genetic study and a major expansion of the UK ME/CFS biobank. The new ME/CFS Biomedical Partnership is headed up Professor Chris Ponting, and Dr Luis Nacul […]
Can mHealth Tools, Smart Clothing Help In Chronic Fatigue Research ?
By Eric Wicklund in mHealth Intelligence. mHealth researchers in Canada are launching a five-year project to gather information through wearables and smart clothing to help people living with chronic fatigue syndrome. The Canadian Institutes of Health Research today unveiled the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis – ICANCME – Research Network. The program will use […]
Fear Of The Unknown – Leaving My Protective Cocoon
By Jo Moss in A Journey Through The Fog. I have a hospital appointment coming up. It’s for a painless, straightforward heart scan (Echocardiogram) as a follow-up to my recent heart problems. Now this would be a simple activity for a healthy, able-bodied person but for someone with a disabling chronic illness like […]
The Legion Man
The Legion Man He stands with pride As well he might Medals upon his chest With memories of the fallen Who now are laid to rest The Legion Man Does all he can To make the world aware To open their eyes, to realise To take time out to care Passers-by, try to miss […]
York Prepares To Mark Remembrance Sunday
By Daniel Willers in The Press. York will pay its respects to fallen soldiers and ex-service personnel at the city’s official Remembrance Sunday service and parade this weekend. The Lord Mayor of York, Cllr Janet Looker, the Civic Party and City of York Council representatives will be among those attending the service and […]
After I Revealed Whitehall Plans To Deceive The Public On Universal Credit, An Investigation Began. Its Conclusions Are Shocking
By Aditya Chakrabortty in The Guardian. Early this summer, a national newspaper published a string of curious articles. Under the logo Universal Credit Uncovered, the features promised readers of the Metro the truth about this most notorious of all benefits. The series began with a giant advert wrapped around the cover of the paper, coupled […]
The Suffering Of One Of Us Is The Story Of All Of Us: Pt I – REELing
By Kyle McNease in Health Rising. (Kyle’s story of going from abundant health to a very severe case of ME/CFS, and then, when all looked bleakest, back to relative health, almost defies description. The length of his narrative, the elegance and directness of his writing, even the difficulty it sometimes presents, makes it unique […]
Ticketmaster Makes ‘Huge Step Forward’ For Disabled Music Fans
By Mark Savage in BBC News. For years, deaf and disabled music fans have faced huge barriers when it comes to booking concert tickets. Whether it’s the requirement to call premium rate help lines, or having to provide evidence of their disabilities, the experience has put many fans off. Now Ticketmaster is introducing […]
BRIXMIS: The Cold War Mission Through The Eyes Of A British Spy
By Dave Butler in Forces Network. BRIXMIS was a unit of the British Army set up at the end of the Second World War as a liaison mission between the wartime allies: Britain, France, America, and The Soviet Union. The term BRIXMIS itself stands for the ‘British Commander-in-Chief’s Mission to the Soviet Forces in […]
Marcel Robert’s View Is A Darkened Room In A Rest Home: Life With Chronic Illness ME
By Natalie Akoorie in M.E. Awareness NZ. Marcel Robert lives in a rest home. He is 31 years old. Natalie Akoorie finds out what it’s like to be unable to live life because of an illness and why funding for research is so important. In a darkened room at Oxford Court Lifecare in […]
Fake Drugs That Could Kill Are On The Rise In Western Countries – Here’s Why
By Susanne Lundin and Rui Liu in The Conversation. Fake medicines – illegal and substandard pharmaceuticals – have until now largely been a problem in low and middle-income countries. Ranging from lifestyle products to lifesaving medicines, such products are now also on the rise in the Western world. The spread is concerning, […]
Activists Combine To Offer PIP Assessment Recording Kits
By John Pring in Disability News Service. Disabled activists have responded to the government’s continuing failure to deal with the dishonesty and inaccuracy of the disability benefit assessment process by launching schemes to ensure that claimants can record their own assessments. Grassroots groups of disabled activists launched two separate campaigns this week […]
Using A Heart Rate Monitor To Prevent Post-Exertional Malaise In ME/CFS
By Susan L. Jackson in ProHealth. One of the identifying characteristics and key symptoms of ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) is an intolerance to even mild exertion, known as Post-Exertional Malaise or PEM. In simple terms, this means that when people with ME/CFS engage in activity – even just walking […]
‘I’ve Got Relatives With ME/CFS’ – Dr Richard Medlicott’s Reason Behind Fundraising Ride
By: Natalie Akoorie in New Zealand Herald. Richard Medlicott is not your usual GP. The Wellington doctor, and former medical director of the New Zealand College of General Practitioners, is raising money for a chronic illness that many in the medical profession know little about. Medlicott has set up a Givealittle page for his […]
My Disabilities Are Invisible. I Shouldn’t Have To Prove Them To Strangers
By Isabelle Jani-Friend in The Guardian. I was recently on a packed Central line train into London. Luckily, I managed to take the last priority disabled seat. My osteoporosis and the fatigue I experience meant it would be hard for me to stand for the 40-minute journey to Oxford Circus. I felt a sense […]
Time For Unrest: Why Patients With ME Are Demanding Justice.
