Personal Stories

Life Of Pippa, Spoonie Survival Kits…..And So Much More !

Pippa

  Hi Everyone. ‘My name is Pippa, and I’m a chronically ill writer and blogger at Life Of Pippa. I’m originally from Sheffield, but moved to York for university and have been here ever since! I’ve had ME/CFS since I was a teenager, but was only diagnosed in 2014, following a relapse at the age of […]

A Huge Step Forward For ME In The US

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    There’s been a huge step forward for ME in the US. Kaiser Permanente is the largest managed care organisation in the U.S. It’s a forward-thinking organisation with a great reputation – which has got everything wrong about ME/CFS – until now. This article explains how Kaiser Permanente are out to change the way […]

Trial By Error: Who Has The School Study Documents ?

David Tuller

      By David Tuller, DrPH. Update (later on March 4): Because Royal United Hospitals Bath suggested that I “redirect” my request for documents back to Bristol University, that’s what I did. Earlier today, I sent an e-mail to Bristol’s director of legal services. Here’s what I wrote: As you likely remember, I have […]

You Don’t Look Sick: ‘My Skin Condition Causes A Lot Of Pain But I Gave Up My Blue Badge Because Of Abuse’

Invisible Illness

  By Laura Abernethy in Metro.     Welcome to You Don’t Look Sick, our new weekly series about invisible illness and disabilities. There are 13.9 million disabled people in the UK, but for many of them, you would have no idea anything is wrong. Lots of people suffer from debilitating symptoms and daily struggles […]

Using A Cane With An Invisible Disability

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  By Kit O’Connell in Approximately 8,000 Words Blog.   I thought I’d write for a moment about what it means to use a cane as a person with an invisible disability (fibromyalgia). Invisible disabilities are life-altering health conditions which are nonetheless not always visible to a normal observer. Even a trained medical professional might miss […]

Why I Gave Up Trying To Be The ‘Good Patient’

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    By Alexis Redenbach in The Mighty. We’ve all seen the movies: the patient stoically braves the struggles of treatment and only gets angry one time, in a huge but righteous burst of frustration. The person in a traumatic accident is told they will never walk again but by sheer force of will, they somehow […]

To Those Who Say Chronically Ill People Are ‘So Lucky’ Not To Work Full-Time

Chronic Illness

  By Alexandra Ellen in The Mighty.   Have you ever had the “joy” of experiencing a conversation similar to this on a Sunday afternoon? “What time do you start work tomorrow?” “Ummm, I don’t work on Mondays.” “Ahhh, you’re so lucky!” I lost count of the number of times I’ve had similar conversations. I […]

Chronic Fatigue Syndrome: ‘It Was Like A Switch Had Been Flipped. I Couldn’t Stand Ip’

Irish Times

  By Louise Ní Chríodáin in The Irish Times.   Aspiring dancer Rosa Devine was 16 when illness took her legs from under her. Bedridden, by what she came to know as chronic fatigue syndrome, comic books and art would become first a solace, and then the trajectory to a new future. “It was easier to […]

Are Surgeons Missing The Major Differential Diagnosis That Is More Common Than Multiple Sclerosis And HIV combined ?

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        By Nina Muirhead in Royal College of Surgeons.   It’s a great feeling when we meet a new outpatient that we know how to manage surgically. Unfortunately, every surgical specialty experiences a subgroup of patients who present with symptoms that cannot be resolved by surgery. These symptoms may span immune, neurological […]

Myalgic Encephalomyelitis – Unknown Cause. No Cure. New Hope.

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  By Lily Williams in ASBMBTODAY.   Lizzie Mooney is 12 years old. She is tall for her age with long blond hair. She likes to wear Chicago Bears pajama bottoms and a hoodie. She’s funny, making up games and teasing her siblings. Lizzie excels in reading and math. She spends time crafting and watches […]

How To Move Forward When You’re Grieving Your Life Before Chronic Illness

Chronic

  By Paige Wyant in The Mighty.   When many people hear the word “grief,” what often comes to mind are the complex emotions a person experiences in the wake of a loved one’s death. Though this is certainly an accurate representation of grief, it is by no means the only one. Grief is much […]

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

Pacing

      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 […]

My Label And Me: I’m Not Tired And Lazy, I Have ME

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  By James Wilson in The Metro. you’re just a bit tired,’ says my friend. ‘Just have another beer, you’ll be fine’. Yep, I am tired but probably not as they, or you, know and understand it. I can’t rest and get my energy back like you can and, as much as I’d like to, […]

21 People Describe What Sensory Overload Feels Like

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  By Melissa McGlensey in The Mighty.   Sensory overload happens when too much sensory stimulus is occurring at once — it can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting — or a hundred other things. It’s often associated with certain diagnoses like autism, sensory processing disorder, chronic fatigue syndrome, fibromyalgia, post-traumatic stress […]

ME And My ‘Friend’

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  I want to Chat And things like that Like we used to do It hurts to talk It pains to walk But I’ll get myself to you.   I’ll get there, it’s not that far Travel by bus, too tough by car Vibrations turn senses into mire The slightest bump, the more I tire […]

The ‘Energy Bubble’ Analogy That Can Help Explain Pacing With A Chronic Illness

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    By Christina Baltais in The Mighty.   Pacing is about energy conservation, both physical and emotional. When you’re living with a chronic illness, it’s an essential skill for preventing flare-ups or “crashes.” This “energy bubble analogy” can be useful to help you visualize and understand the limits of your energy, and help you explain them […]

We Need To Stop Talking About Chronic Illness In This Particular Way

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  By Annie M. In The Mighty.   Have you ever noticed how people talk about illness, even mild illnesses like colds? We often say we are fighting them. We battle colds and fight the flu. We call our friends with scary medical conditions “warriors,” and we encourage them in their “battle” against their illness. It’s true […]

Trial By Error: Professor Sharpe’s Retraction Requests

David Tuller

    By David Tuller, DrPH After this month’s release of the Health Research Authority’s PACE analysis, Professor Michael Sharpe sent e-mails to at least two US publications requesting a retraction or major correction of critical articles. Professor Sharpe’s e-mails accused the writers involved of suggesting that PACE was “fraudulent.” This accusation was not true. In […]

Berwick Kaler Foundation Aims To Bring Together Theatre And Community

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From The Yorkshire Times.   As Berwick Kaler’s 40-year reign as pantomime dame comes to an end, York Theatre Royal has launched a fund to celebrate and continue his legacy. “The Berwick Kaler Foundation will enable us to bring families, friends and communities together to share experiences and enjoy theatre in all its many forms,” […]

14 Things People May Not Realize We Do Because Of Sudden Flare-Ups

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  By Cassidy Colbert in The Mighty.   Living life with a chronic illness is basically living life constantly walking on eggshells. One day you may be bouncing off the walls because you are so full of energy and the next you are lying on the cool bathroom floor — your only source of relief from the agonizing […]

Foldalite Travel Powerchair Review

Natasha Lipman

    But Natasha Lipman.   I can’t believe that it has almost been a year since I finally bought my first ever powerchair, the Rascal P321 (also called my ‘Mario Kart’ or ‘The Dizzy Rascal’ by my friends – cos I have PoTS and am always dizzy, gettit?) It truly was a long time coming, and […]

Facing Skepticism From Others That My Illness Isn’t ‘Real’

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  By Rebecca Handler in The Mighty.   Those of us with chronic illness are often forced to wage two wars at once. Not only must we cope with the immeasurable impact of our illness, but many of us also face the burden of skepticism from peers, the medical community, friends, and even family. If you’re anything […]

The Power Of Listening

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      By Naomi Whittingham in A Life Hidden.   In September 2016, I contributed to a training course for junior doctors at my local hospital.  The following was used as part of a seminar entitled “Patients and doctors as partners in learning”.  I used the term ME/CFS for this piece, as this is how ME is […]

A Winter’s Tale – A Former Mountain Climber Reflects On Post Exertional Malaise And ME/CFS/FM

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By Simon Parker in Health Rising.   Fifteen years ago I was diagnosed with Fibromyalgia and ME (aka Chronic Fatigue Syndrome), a debilitating condition that includes continual pain and delayed fatigue as its primary symptoms. I often find myself trying to explain to other people what the delayed fatigue is like by giving an example […]

Guest Blog: Life In The Slow Lane – Musings Of A Police Officer On A Diagnosis Of ME/CFS

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  From Disabled Police Association.   Colin Paine is a Detective Chief Superintendent in Thames Valley Police. He is currently working on the Police Spending Review with the NPCC. Here he reflects on his diagnosis of Myalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS).   Police work feels inherently fast paced. It is in the nature of our work that […]

What About M.E.? Living With A Little Known And Widely Misunderstood Neurological Disease

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    By Lori, in Rare Disease Day.   What About M.E.? Living with a Little Known and Widely Misunderstood Neurological Disease Myalgic Encephalomyelitis Chronic Fatigue Syndrome, or ME CFS for short, is the disabling disease that I’ve been diagnosed with and that has changed my life forever. First, some words about the disease itself. […]

Mike’s EU Marathon Challenge

Mike Amsterdam

  By Mike Harley.   Running a marathon in each EU member country (28 currently) for Invest In ME (www.investinme.org) for biomedical research to treat and cure ME. Next up: #20 Paphos (Cyprus), 17/03/19   To read the rest of this story, click on the link below:   Link to Mike Harley’s story

The Discrimination I Experience As A Young Person With Invisible Illness

Invisible Illness

  By Nora W in The Mighty.   There are thousands of chronic illnesses and even more people who have chronic illnesses. It’s hard for most people to believe, but yes, young people have various chronic illnesses too. I cannot tell you how many times I have told somebody I have a chronic illness and the response I […]

My Experience With Rituximab For ME Sleep Studies, Disorders And Treatments with ME

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By cfssufferer in Living With Chronic Fatigue Syndrome.   In 2015 I detailed the best sleep aids for ME according to ME/CFS specialists and my own experiences. Since this date I have been on a rollercoaster journey in search of some much needed refreshing sleep. This article will cover my travails as well as what I have since learnt regarding […]

Britain’s Longest-Serving Panto Dame Berwick Kaler Faces Final Curtain

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    By Charles Hutchinson in The Press. BERWICK Kaler is not retiring. However, Britain’s longest-running pantomime dame has confirmed that tonight’s performance of The Grand Old Dame Of York will be the last time he pulls on the dame’s trademark boots and red and yellow stockings after 40 years at York Theatre Royal. The […]

The Effects Of Graded Exercise Therapy And Positive Thinking On A Young Girl With ME

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      By Adriane Tillman in #MEAction.   Exercise protocols prescribed for myalgic encephalomyelitis (ME) were powerful enough for Cherry to ignore the physiological realities of her disease. Cherry is now 100 percent bedridden. When 16-year-old Cherry from North London began the treatment prescribed for her myalgic encephalomyelitis (ME) in 2013, she was able to walk […]

Changing The Narrative #3: Due Process, Engagement And A Pathway (Magic Bullet Not Included)

Valerie Eliot-Smith

  By Valerie Eliot Smith. The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.  ******************** Since I started publishing this series of posts, I have received mixed feedback. I’m grateful to those who have provided positive and constructive comments. There have also been some less helpful reactions […]

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