Chronic Fatigue Syndrome

Chronic Fatigue Syndrome

Is The Brain Causing The Small Fiber Neuropathy In Fibromyalgia (And ME/CFS ?)

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    By Cort Johnson in Health Rising.   It seemed ever so clear. The reduction in the number of small nerves in the skin and eyes of roughly forty percent or so of the people with fibromyalgia (FM) and chronic fatigue syndrome (ME/CFS) must bring the body – as opposed to the brain – into […]

My Disabilities Are Invisible. I Shouldn’t Have To Prove Them To Strangers

Invisible Illness

  By Isabelle Jani-Friend in The Guardian.   I was recently on a packed Central line train into London. Luckily, I managed to take the last priority disabled seat. My osteoporosis and the fatigue I experience meant it would be hard for me to stand for the 40-minute journey to Oxford Circus. I felt a […]

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 […]

No One Prepares You For The Grief Of Chronic Fatigue Syndrome

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    By Asa Lovell  in The Mighty.   No one prepares you for the grief and feelings of inadequacy you get when you have chronic illnesses. They make such a huge impact on your life that they derail you, stop you from achieving the things you’re working for in the time you’d planned. You […]

The Frail Teenager Set To Spend All Of Her Summer Holidays In Her Bedroom

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    By Mark Smith in Wales Online.   Lola Brandrick, 13, from Swansea, is crippled by pain and is constantly exhausted. While all her school mates are out enjoying their summer holidays, poor Lola Brandrick can only dream of joining them. The 13-year-old is confined to her bed, constantly exhausted and crippled by widespread […]

Words From A Hidden World

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    By Naomi Whittingham.   Welcome  to my blog.  The main purpose of this site is to bring together my existing work, but I also hope to add new writing from time to time.  I have never blogged before and am looking forward to the freedom of writing as I wish, with full editorial control.  (The downside is […]

Ten Top Tips For Accessible Recruitment

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    By  Jo Verrent in Unlimited.   Unlimited, in its current form, has been recruiting for disabled trainees since 2013. What have we learnt about accessible recruitment? Jo Verrent, Senior Producer for Unlimited, gives us her top ten tips… Target where you advertise – find out where disabled people might be, and go out of your […]

When I Can’t Control How Chronic Illness Is Affecting My Body

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  By Laurel Younis in The Mighty.   OK, here it – the biggest and most important secret you will need to survive chronic illness. The key to surviving chronic illness is surviving it in any way you can. Now I know what you may be thinking, “Really? Is this seriously the advice you’re giving […]

Finding Accessible Work With A Chronic Illness

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    From the Life of Pippa Blog.   Since I started blogging, there’s one question I’ve consistently been asked more than any other: how I found my flexible, work from home opportunities. If you don’t already know, I split my time between social media management and content creation in the charity sector, self-employment as […]

“This Is What Disabled Looks Like”: The Sometimes Hard-To-See Line Between Visible And Invisible Disabilities

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  From the CoffeeSpoonie Blog.   There are disabilities we think of as visible, and disabilities we think of as invisible. (Mental illness? Invisible. Quadriplegia? Visible. Autoimmune disease? Invisible. Blindness, with a cane and guide dog? Visible.) Neat little categories that we are expected to sort our disabilities into, to help others understand better when […]

It’s OK To Feel Angry Or Resentful Sometimes When You Have A Chronic Illness

Chronic Pain

  By Juliana Philippa Kerrest  in The Mighty.   Something I greatly struggle with are the emotional ups and downs that come with dealing with a chronic illness. I have three chronic conditions that have affected me to varying degrees throughout my life: psychological, neurological, and autoimmune. Most of the time, I handle it relatively well; I […]

Confessions Of A Chronic Fatigue Skeptic

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    By Shell Pettifer in The Mighty.   “Chronic fatigue, my arse!” I have a confession to make. I have oftentimes throughout my life internally judged people for being overly dramatic. There, I’ve said it. I am a closet censure. I am guilty of internal eye rolls, doubtful compassion and quite frankly some completely uneducated […]

More Than Half Of Disabled Passengers Still Find Air Travel Difficult, Says Regulator

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    By John Pring in Disability News Service.   More than half of passengers who describe themselves as having an impairment that limits their day-today activity find travelling by air difficult, according to a regulator’s annual report on access at the UK’s major airports. The Civil Aviation Authority’s (CAA) annual report on disability access contains […]

Potential Dangers Of Exercise Or Activity For ME And Chronic Fatigue Syndrome

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    From the How To Get On Blog.   We are taught that exercise is supposed to make us feel better. Staying active is supposed to make us healthier. Getting out of bed is supposed to improve our quality of life. Sadly, for people with Myalgic Encephalomyelitis or “Chronic Fatigue Syndrome,” the opposite can […]

What To Consider When Employing People With Disabilities

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  By Robert Stack Forbes Councils Member.   President Trump kicked off his re-election campaign last month with a list of accomplishments, from the market rebound to unemployment being “the lowest it has been in 51 years.” According to a Society for Human Resource Management (SHRM) article, “With unemployment at a low, fewer people are looking for jobs. Many employers […]

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 […]

Onset: Part III (Connections)

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  By Jennifer Brea.   I’ve previously written about how a bad mold exposure and my acute, viral onset of myalgic encephalomyelitis (ME) could have directly and indirectly damaged my connective tissue, including the ligaments in my neck, causing craniocervical instability (CCI). A key mediator of that damage might have been mast cell activation and collagen-degrading enzymes. The coup de grâce (and it really was, oddly, […]

Practical Solutions To Everyday Spoonie Problems

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  By Jo Moss in A Journey Through The Fog.   Having a chronic illness means everyday tasks can be challenging, exhausting and painful. But there are steps we can take to make life easier, to limit the stress caused and to conserve our energy for more enjoyable activities. Here are some practical solutions to […]

Chronic Fatigue Syndrome (ME/CFS) Article Rocks Top Medical Journal

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    By Cort Johnson in Health Rising.   It took Tony Komaroff over thirty years to get this done but it may have been worth it. Komaroff, Harvard doctor, researcher and ME/CFS advocate, has been studying, writing about and advocating for ME/CFS research since at least 1987 when he was the senior author on […]

ME/CFS Research: The First Quarter Of 2019 In Review

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  By Rochelle Joslyn (PhD) Edited by Allison Ramiller, in Solve ME/CFS Initiative.   2019 is off to a strong start for ME/CFS research! From the search for sensitive and specific biomarkers in neuroimaging and CPET testing, to the use of next generation (RNA) sequencing in transcriptomic analyses of peripheral blood, findings from the first […]

World Emoji Day 2019: First Look At The New Disability Emojis For Release On iOS This Autumn

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  By Rhiannon Williams in iNews.   Disability-themed icons, a yawning face and a sloth are among the new characters to be released in honour of World Emoji Day. Apple has previewed a selection of emoji due for release in the autumn, including a range of inclusive disability-themed characters. The reveal coincides with World Emoji Day, an unofficial […]

Stress, PTSD And Parents Of Kids With Disabilities

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    By Dr. Liz Matheis  in The Mighty.   As a Psychologist, I am in the business of receiving phone calls from parents worried about their kids with disabilities. During that initial phone call, parents give me a quick run-down of their child’s symptoms, the struggles the family at large is facing, and the specific goals […]

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 […]

Chronic fatigue Syndrome And An Illness-Focused Approach To Care: Controversy, Morality And Paradox

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  By Susanna Agardy, in BMJ Journals. At the heart of Sharpe and Greco’s article lies the complaint that while cancer patients accept CBT/GET treatments for their fatigue, ME/CFS patients reject these treatments. Of course they do! ME/CFS patients have a different disease, the main feature of which makes them unable to increase exertion. The article contains […]

Extreme Itch In Fibromyalgia And Chronic Fatigue Syndrome

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By Adrienne Dellwo in Very Well Health.   Because fibromyalgia and chronic fatigue syndromeinvolve the central nervous system, we get all kinds of strange things goings on with our nerves. Along with burning, tingling, numbness, and pinpricks, we can experience itchiness that can be severe and persistent. It’s maddening, especially since scratching doesn’t do a thing to help. For […]

20 ‘Comebacks’ To Use When A Doctor Isn’t Taking You Seriously

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  By Erin Migdol in The Mighty.   When you have an illness that is invisible, complex and/or difficult to treat, that sometimes translates into challenging experiences with doctors. While there are many kind, compassionate doctors out there who are willing to put in the time to figure out your health issues, unfortunately many in […]

Crippled: Austerity And The Demonisation Of Disabled People By Frances Ryan – Review

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  By Yvonne Roberts in The Guardian.   Two years ago the United Nations released the findings of a secret inquiry into state-level violations of the human rights of disabled people. Its conclusion was that a “human catastrophe” was under way. In every sphere, including employment, housing, education and social security, disabled people are hugely disadvantaged. Shamefully, […]

Disabled People Are Sharing The Worst ‘Compliments’ They’ve Received

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  By Serena Coady in The Metro.   Ever felt the sting of a backhanded compliment? Perhaps you’ve been told that your English is ‘surprisingly’ good, or that you’re funny… ‘for a woman’. A new Twitter hashtag, #DisabledCompliments, is highlighting that veiled insults are sometimes a daily reality for people with a disability. The viral […]

One North-West Town Is Getting It Right For Disabled People On Public Transport – So Why Can’t The Rest Of Britain ?

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  By James Moore in The Independent.   When you’re disabled the phrase “back to earth with a bump” is all too familiar. On Thursday I wrote about what I’d describe as a rare win: the Greater London Authority sent a motion to London mayor Sadiq Khan following my humiliating experience on the tube (I was […]

Chronic Illness & Boredom – The Real Groundhog Day

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    By Jo Moss in A Journey Through The Fog.   Each month a fellow blogger (A Chronic Voice) hosts a ‘Link-up party’. It is a monthly get-together for anyone with a chronic illness. An opportunity to share, to listen, and to learn from one another. It’s a great way to provide insight into life […]

Disabled People Already Fight Battles Every Day. Making Us Prove We Need Benefits Is Almost Inhumane

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  By Samantha Renke in The Metro.   Living with a disability in the UK today means living in a state of perpetual fear, feeling unheard, patronised and at times like a burden – and it can take a huge toll on your mental health. I was born with a genetic condition called Osteogenesis Impefecta […]

The Epstein-Barr Virus – Could It Be Causing Neuroinflammation In ME/CFS ?

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    By Cort Johnson in Simmaron Research.   BV has been a virus of interest since almost day one in chronic fatigue syndrome (ME/CFS). In fact, at one point, EBV was such a hot topic that ME/CFS was called for a time “chronic Epstein-Barr virus” disease. While studies have generally failed to find evidence […]

9 Relatable Comics That Nail What It’s Like To Have Chronic Illness

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      By Michelle Levy in The Mighty.   Getting sick is no laughing matter, but it often takes humor to be able to get through the ups and downs of chronic illness. While some of these comics make us laugh out loud in pained affirmation, mostly they raise awareness of chronic illness, and […]

The illusion You Will Be Forever Able Bodied And The Limits Of Empathy

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      By James C Coyne.   This is an edit of something I wrote in 2016, which I return to read every now and then. Sometimes I tinker with it, like now. I wrote it soon after I first became a professional advocating for patients with chronic fatigue syndrome and myalgic encephalomyelitis, a set […]

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