ME Symptoms

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 […]

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 […]

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. […]

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. […]

Fear Of The Unknown – Leaving My Protective Cocoon

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  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 […]

Using A Heart Rate Monitor To Prevent Post-Exertional Malaise In ME/CFS

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    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 […]

URGENT RECALL Two New Alerts Over Common Heartburn Drug Recalled Over Cancer Fears – Including Boots And Morrison Own-Brands

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    By Lizzie Parry in The Sun.   COMMON heartburn drugs sold over-the-counter have been urgently recalled – over fears they could contain cancer-causing chemicals. It’s the third major recall of its kind, six types of prescription-only Zantac were recalled earlier this month. Now, six more products have been added to the list, the Medicines and […]

Scandic Hotels Introduces Standard For Fragrance-Free Allergy-Friendly Rooms

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From Fragrance Sensitivity Australia.   Scandic Hotels, which has hotels in Sweden, Finland, Denmark, Norway, Germany, Poland, is the first hotel chain in the world to introduce a standard for allergy-friendly rooms. This means that guests booking allergy-friendly rooms can expect rooms prepared according to strict cleaning procedures and fragrance-free, hypoallergenic toiletries approved by the Swedish […]

The Never-Ending Challenge Of Dealing With Post-Exertional Malaise (PEM)

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  From the Not Just Tired Blog.   After a good day, or a spell of feeling pretty ok, it’s always a kick in the teeth when Post-Exertional Malaise (PEM) catches up with you. As I’m sure those of you living with ME/CFS, will be all too familiar with. For those not familiar, PEM is […]

Ten Ways To Prove That Chronic Fatigue Syndrome (ME/CFS) Is A Serious Illness

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      By Cort Johnson in Health Rising. Chronic fatigue syndrome is a terrible name. It’s such a terrible name that you have to give the people around you a little break. With that name, they’re almost doomed, at least at first, to think ME/CFS is a milquetoast kind of disease best suited to […]

The ‘All In The Mind’ Myth Of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

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  From Nursing In Practice. Health professionals should be made aware that ME/CFS is not a psychological illness and in order to improve patient care, nurses need to better understand this illness and its impact on patients. Nurses often witness close-up the impact of acute and chronic illness on patients. Myalgic encephalomyelitis (ME)/chronic fatigue syndrome […]

My Life With M.E. – Exploding The Myths

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    by Chrissy Russell. Myalgic encephalomyelitis (M.E.), chronic fatigue syndrome (CFS), Yuppy Flu, post-viral fatigue syndrome (PVFS), chronic fatigue immune dysfunction syndrome (CFIDS), systemic exertion intolerance disease (SEID)… The list goes on. Each decade has seen a new name, but the erroneous perception of it remains the same. The Word Health Organisation classifies the disease as Myalgic […]

Pacing Is A Simple Concept. So Why Do I Find It So Hard ?

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    By Jo Moss in A Journey Through The Fog.   Living with a chronic illness like ME/CFS creates many challenges. Along with the multitude of symptoms, we also have to learn to adapt to the restrictions placed on our lives and to manage our limited energy levels. The term “pacing” crops up repeatedly […]

Anna spends 22 hours a day in bed. But experts hope they’re close to a cure

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      By Melissa Cunningham in The Sydney Morning Herald.   Anna Kerr often spends up to 22 hours a day in a darkened room unable to get out of bed. Following her first pregnancy, the Thornbury mother-of-two felt something was amiss. At first, it was a newfound reaction to wine and coffee, triggering nausea, weakness […]

The Impact Of ME

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  By Jenny in Scope.   Hi, my name is Jenny and I’m 24 years old. I’ve had Myalgic Encephalomyelitis (M.E) for 5 years but have been experiencing chronic pain and fatigue caused by multiple health problems from the age of 16. One of my hobbies is writing my blog: This thing they called recovery. The […]

Aid Without Asking: How To Support Someone With ME

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  By Jonny Foster in #MEAction.   The love of my life battles ME/CFS. It’s a disease that my father has also struggled with since I was a boy, so it’s one I know well. I knew life wasn’t going to be simple when we met, but I dove in head-first anyway. I can’t say […]

My Invisible Illness Just Became Visible And Here’s Why

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    By Lisa Alioto in Realistic Optimism.   I have an invisible illness, meaning you cannot see it, but it’s oh, so present for me every minute of my life. I’m constantly exhausted, in pain, have a variety of cognitive deficits, vision loss, light, sound, and temperature sensitivities, a weakened immune system, and many, many […]

Please Stop Trying To ‘Fix’ My ME/CFS

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  By Simone DM in The Mighty.   When you become ill, all you want is for others to be compassionate and understanding. Yet when you come down with something like ME (myalgic encephalomyelitis), that not even your doctor comprehends, it’s a different story. Others are quick to pass judgement, believing you are somehow causing your […]

The Secret Of Change: Spend Your Energy Wisely With Chronic Illness

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    From A Chronic Voice.   Chronic illness is a monster consumer of energy, leaving little to spare. Why waste it on unnecessary thoughts and unchangeable circumstances? So I ask myself, “what can I do to make things better? Is there something I’d like to create for myself today? How can I become a […]

How My Life Has Changed Since I Developed ME/CFS

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  By Lisa Alioto in The Mighty.   When I was me… I always greeted you with a smile. I may have tried to say something funny to put a smile on your face and I was always excited about whatever plans we had for the day. When I was me… I worked out. Sweaty, […]

Why Having ME/CFS Makes Me Dread The Summer

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  By Jo Moss in Journey Through The Fog.   After I read the news that the temperatures in the UK were going to reach 27 degrees this week, my anxiety levels rose dramatically and panic set in. I hoped I would having longer to adjust to the summer – what happened to spring? – […]

Shopping with ME

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  SHOPPING WITH ME   Tried to do some shopping today Hellfire, what was I thinking, Woke up this morning And it hurt, just blinking.   Dark specs, earplugs in, Trying to keep out all of the din Kids in the corner calling for dad Tells them ‘be quiet’ For that I’m so glad   […]

Talk To Me ….But Slowly

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  TALK TO ME….BUT SLOWLY   I used to love the banter Noisy bar room chat Then when the beastly ME hit It put a stop to that   Noise is now my Kryptonite My Achilles’ heel is sound It’s not by choice That the tone of a voice Can knock me to the ground […]

Fit And Active Cardiff Woman Left Bedbound After Developing ME

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  From ITV News.   For the past year, 28-year-old Natalie Price has been living in darkness and silence. In 2014, she was diagnosed with myalgic encephalomyelitis, commonly known as ME or chronic fatigue syndrome. Sufferers complain of symptoms including extreme tiredness and fatigue, constant pain, extreme headaches and sensitivity to light and sounds. Since […]

‘Hard To Cope’ Mum-Of-Two With Chronic Fatigue Says Condition Is Triggered By Her Noisy Kids

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  By John Siddle and Gemma Mullin, Digital Health Reporter in The Sun.   Katy Beardsworth has ME and has to lie down in a dark room when her kids start being loud. Katy Beardsworth, 38, has ME – a cruel illness which presents as unrelenting exhaustion and profound pain. The deeply misunderstood neurological condition […]

Toxic Masculinity Made My ME Much More Punishing

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    By Jack Croxall in #MEAction.   I came to on the floor of a supermarket in an affluent London borough. I was staring up at a paneled ceiling, half-blinded by piercing white lights. After a groggy moment of confusion, panic set in. I leapt up, finding myself in the middle of a queue […]

If Your Chronic Illness Is Making You Want to Give Up

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  By Candida Reece in The Mighty. Having a chronic illness can mean life can be rough. It means going to the store with only one sock on because you didn’t want to go through the pain to find the other one; or maybe your shirt is inside out, or you have two different shoes, or clothes […]

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