myalgic encephalomyelitis

Noise And ME

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    NOISE AND ME My ME sensory radar Has really taken hold It’s caused my life to change, In a way that’s strange And not just because I’m old ! Noise and sounds now cripple me In ways some won’t believe The click of a door Can get right to my core In a […]

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Initiative

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    From Stanford Medicine   Welcome The ME/CFS Initiative conducts extensive clinical research in an effort to improve diagnosis and treatment of this debilitating illness. Stanford Medicine has had great success in engaging and collaborating with nearly 50 researchers across Stanford University and beyond. Together, they have discovered various potential biomarkers that have confirmed […]

#MEAction Scotland’s Petition: Progress Continues

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  From Meaction Scotland.   On Thursday 19th December, 2019 the Scottish Parliament’s Public Petitions Committee met to continue its consideration of  #MEAction Scotland’s petition, PE1690, which calls for a review of treatment of people with myalgic encephalomyelitis (ME) in Scotland. Appearing before the committee to give evidence were Jeane Freeman, the Scottish Government’s Cabinet Secretary for […]

The Grace Charity For ME

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    From The Grace Charity site.   If you have M.E., the following might help you practically: G.P. If anyone can recommend good GPs in the Maidstone area for M.E. sufferers, please let us know. Try to get a supportive G.P. They are the gateway to much needed benefits. If you can’t get a […]

Marcie Zinn Was A Force For ME

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    From Meaction. We are deeply saddened by the sudden death of Marcie Zinn, PhD, who was a dedicated researcher, advocate and person with myalgic encephalomyelitis (ME). Marcie died of sudden heart failure on Dec. 28, 2019. Marcie and her husband, Mark, founded the Neurocognitive Research Institute (NCRI), a non-profit that specializes in 3D-mapping of the […]

The Temporary ME/CFS And Fibromyalgia Recovery Stories – What Can They Tell Us ?

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  By Cort Johnson in Health Rising.   In 2015, Dean Echenberg, MD, PhD, a former public health official and Director of Disease Control in San Francisco at the height of the HIV/AIDS epidemic, had a question. His own course of ME/CFS had been anything but smooth. Echenberg had experienced years of illness punctuated sometimes […]

Smartphones Are Introducing Tech That Makes The World More Accessible For People With Disabilities

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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. […]

Mayo Clinic Research Discovers A Molecular Switch For Repairing Central Nervous System Disorders

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  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

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  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 […]

The Hollow Man

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  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”

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  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

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    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

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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

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    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

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  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

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  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 […]

A Blue Badge And Invisible ME

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    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 […]

Book Exposes ‘Horrifying’ Levels Of Abuse Faced By Disabled People On Public Transport

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  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

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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 […]

Living With An Unsociable Illness

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  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

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    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”

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  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 […]

Study Finds Differences In Energy Use By Immune Cells In ME/CFS

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  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)

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    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

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    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 […]

Tips On How To Survive The Festive Season

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  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 […]

Resting When Tired Isn’t Lazy – It’s Self Care

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    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

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    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 […]

7 Ways To Tackle Low Self-Esteem With Chronic Fatigue Syndrome And Fibromyalgia

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  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 […]

UK Charity Pledges £500,000 For Research Into ME In Norwich Research Park

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    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 ?

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      By Damon Rose & Beth Rose in BBC News.   With 13 million disabled people in the country, plus their friends and family, the political parties have a huge community to court. Universal credit is still making headlines, while the main parties are divided on what to do with the social care […]

“Neither Dying, Nor Recovering”: Learning From ICUs To Solve ME/CFS And Fibromyalgia – A Synopsis

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    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 […]

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