ME/CFS Information

You Don’t Look Sick: ‘You Might Think I Look Better But I Still Feel Horrible Every Day’

Frustration Chronic Illness

By Laura Abernethy in The Metro. Amy Norris, 23, from Southampton has postural orthostatic tachycardia syndrome (PoTS) and chronic fatigue syndrome (also known as myalgic encephalomyelitis) (CFS/ME). As part of our, You Don’t Look Sick series about invisible illnesses, Amy chatted to Metro.co.uk about living with both conditions and how most people still don’t understand chronic […]

“The Tompkins Effect” at Harvard University: More Than Just An ME/CFS Research Center

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  By Cort Johnson in Health Rising.   The Ron Tompkins Effect Ron Tompkins had recently come back from a meeting with over a dozen MD’s and specialists from Mass General Hospital who’d evinced a strong interest in ME/CFS. Dr. Bateman has said it’s easy to get researchers, at least, interested in this disease but […]

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 […]

Developing Chronic Fatigue Taught Me To Live In The Moment

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  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

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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 […]

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 […]

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 […]

Trial By Error: Shaky Evidence For Signs Of Functional Neurological Disorders

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  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 […]

“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 […]

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 […]

Natural Born Killers

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  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

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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 […]

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 […]

Trial By Error: Fiona Godlee Doubles Down On Lightning Process Study

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      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

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  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

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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 […]

You Don’t Look Sick: ‘People Think I’m Too Young To Be Disabled’

Frustration Chronic Illness

    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 […]

Are You A Clumper Or Slider ? The ESR ME/CFS And Fibromyalgia Poll

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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, […]

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