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 […]
Myalgic Encephalomyelitis
Myalgic Encephalomyelitis
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 […]
7 Ways To Tackle Low Self-Esteem With Chronic Fatigue Syndrome And Fibromyalgia
By Colleen Downey in The Mighty. Self-esteem is generally described as the degree of regard or respect individuals have for themselves and is a subjective measure of worth that we place on our abilities and judgments; it is an understanding we create of our worth based on emotions and beliefs about how we […]
Sainsbury’s, I Don’t Need A Lanyard To Warn You About My Disability – You Need To Provide Better Training
By Liz Johnsin in The Independent. It’s great that major brands are getting serious about inclusion, but initiatives should focus on taking away barriers, rather than forcing marginalised groups to mark out their difference. Sunflower season may be over but Sainsbury’s wants to see more in bloom this autumn following its latest announcement. On […]
ME.rry Christmas !
UK Charity Pledges £500,000 For Research Into ME In Norwich Research Park
From The Quadram Institute. UK Charity Invest in ME Research is pledging £500,000 for continued research into the disease myalgic encephalomyelitis (ME or ME/CFS) in Norwich Research Park, UK (NRP). This major investment builds on the foundations already made for a UK/European Centre of Excellence for ME research hub in Norwich Research Park. The […]
General election 2019: What’s Pledged For Disability And Mental Health ?
“Neither Dying, Nor Recovering”: Learning From ICUs To Solve ME/CFS And Fibromyalgia – A Synopsis
By Dominic Stanculescu in Health Rising. From Dominic I believe observations made in Intensive Care Units can further understanding of ME/CFS. Indeed, following a severe injury or infection some ICU patients fail to begin recovery for unknown reasons. This condition, termed “chronic” or “prolonged critical illness,” is characterized by neuroendocrine dysfunctions perpetuated by cytokines and oxidative/nitrosative stress. Regardless of the initial injury or […]
You Don’t Look Sick: ‘People Think I’m Too Young To Be Disabled’
By Laura Abernethy in The Metro. ‘But you don’t look sick’ is something that people with chronic illnesses often hear. Others judge them based on their idea of what disability looks like. Our series speaks to a different person each week about their experiences of living with a long term condition and how […]
Disabled People Like Me Are Being Forced To Battle Daily For Our Most Basic Needs
By Susan McKinstery in Huffpost. I was born in 1981, the year declared “International Year of Persons with Disabilities” by the UN. It heralded the beginning of the “Decade for Persons with Disabilities”, which saw the beginning of what would go on to become landmark equalities legislation and political policy making. The intention for […]
Are You A Clumper Or Slider ? The ESR ME/CFS And Fibromyalgia Poll
By Cort Johnson in Health Rising. It’s the simplest of medical tests. The erythrocyte sedimentation rate (ESR or SED rate) test simply measures the rate at which the red blood cells in whole blood descend in a test tube over a period of one hour. This non-specific measure of inflammation works because, during an inflammatory process, […]
York Disability Forum
Ask About My Disability If You’re Curious, But Don’t Patronise Me
By Samantha Renke in the Metro. As a disabled woman, I’ve sadly become somewhat immune to overt forms of aggression and discrimination. I almost expect the lift to be out of service whilst shopping. I also acknowledge that my work prospects are diminished in comparison to my non-disabled peers, and that it’s highly […]
Solid Ground At Last ? Cytokines Make Good In Major ME/CFS Review
By Cort Johnson in Simmaron Research. The immune system in chronic fatigue syndrome (ME/CFS) has been kind of like a mirage in the desert. Given the way the disease starts and its symptom presentation – so close to the “sickness behavior” produced during an infection – it seems that the immune system must […]
Meet The Researchers – Michael Van Elzakker (PhD) and Kenneth Kwong (PhD)
From Solve ME/CFS Initiative. Michael (Mike) Van Elzakker, PhD, a researcher at Massachusetts General Hospital and Harvard Medical School, has been an influential thought leader in how the field might leverage imaging techniques to assess neurological features of ME/CFS. Kenneth (Ken) Kwong, PhD and Suk-tak (Phoebe) Chan, PhD, experts in functional magnetic resonance imaging (fMRI), will co-lead the […]
‘They Think Disability Is Almost Worse Than Being Dead’
Link Between Inflammation And Mental Sluggishness Shown In New Study
From Science Daily. Scientists at the University of Birmingham in collaboration with the University of Amsterdam have uncovered a possible explanation for the mental sluggishness that often accompanies illness. An estimated 12M UK citizens have a chronic medical condition, and many of them report severe mental fatigue that they characterize as ‘sluggishness’ or ‘brain […]
What An M.E. Crash Feels Like
HELLO, IS IT ME YOU’RE LOOKING FOR ?
Don’t Fight The Quicksand
A Trial Of ME – Elizabeth’s Story
Trial By Error: “Bristol, It Is Time To Withdraw Your Complaints To Berkeley”
By David Tuller, DrPH I have sent the following letter to Jane Bridgwater, Bristol University’s director of legal services and deputy university secretary. ********** Jane Bridgwater Director of Legal Services and Deputy University Secretary University of Bristol Bristol, UK Dear Ms Bridgwater: I have raised multiple concerns in recent years about research conducted […]
GP Home Visits Under Threat
From Action For ME. Action for M.E. has raised serious concerns with every Local Medical Committee (LMC) following the announcement of a motion at their conference by Kent LMC to stop home visits by GPs. LMCs are the independent bodies who work with the British Medical Association to shape policy. If successful, […]
My Typical Day As A Chronic Fatigue Blogger
Breaking Through The Stigma Of Chronic Fatigue Syndrome
The 20 Best Supplements For Pain & Fatigue
Beneath The Surface, Part 3
From A Life Hidden. The third and final part of a series analysing the British Association of CFS/ME (BACME) guidelines on severe ME. I have chosen to write extensively on this subject, as the guidelines encompass several themes that are important to me. The BACME guidelines support the biopsychosocial (BPS) model of ME, which […]
Hello, Is It Me You’re Looking For ?
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
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
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 […]
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 […]