ME Symptoms

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 […]

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 […]

M.E. Just Cut And Paste….

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  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

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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. […]

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 […]

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 […]

5 Tips For Making Your Christmas Party Accessible

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  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

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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

David Tuller

    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 […]

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 […]

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 […]

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 […]

“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 […]

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, […]

York Disability Forum

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  Today I’ll be attending a meeting to see if creating a York Disability Forum will be helpful in giving us more of a voice in the area.  I’ll report back on here as to how it goes. If you’re in York and want to let me know of any good, bad or indifferent stories on […]

Solid Ground At Last ? Cytokines Make Good In Major ME/CFS Review

Research

  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 […]

Link Between Inflammation And Mental Sluggishness Shown In New Study

Brain Fog

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

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    From the Mummying And M.E. Blog.   NB: This is just my experience of an M.E. crash. This description is not going to be the same for everyone. My daughter is talking to me this morning, but I don’t understand what she’s saying. My husband has been doing the washing up downstairs, opening […]

Don’t Fight The Quicksand

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From Lorem Ipsum Life   When I was a kid I thought quicksand was going to be a much bigger problem.* Weirdly, as inaccurate as the movie depictions were of quicksand, they make an excellent analogy for activity and ME. TV and movies taught me that if I fall into quicksand, the worst thing I could […]

A Trial Of ME – Elizabeth’s Story

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  By Elizabeth Thorne in #MEAction. This is me, my story, I am one of the millions missing. I may not look ill to you, but if you see me, it will be because I am having a ‘good’ day because I am well enough to be able to get dressed and leave the house. […]

Trial By Error: “Bristol, It Is Time To Withdraw Your Complaints To Berkeley”

David Tuller

    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

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    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, […]

Breaking Through The Stigma Of Chronic Fatigue Syndrome

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  On Mornings with Kia Handley.   It’s more than just being tired. It’s got nothing to do with being lazy or making things up or being a hypochondriac. Life with Chronic Fatigue Syndrome is full of stigma and frustration. So what is it like? Nelly Thomas, comedian and author, is a mother to a […]

The 20 Best Supplements For Pain & Fatigue

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    By Jo Moss in A Journey Through The Fog.   Pain and fatigue are probably the two most common symptoms across a whole host of medical conditions. It is estimated that around 43% of people in the UK experience chronic pain – this equates to 28 million in the UK alone. In the […]

Beneath The Surface, Part 3

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    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 […]

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