Invisible / Chronic Illness

Straight Talk From Carol Head As She Steps Down From Solve ME

Carol Head

  By Cort Johnson in Health Rising.   ME/CFS Rears Its Head Again A commitment to social justice runs in Carol Head’s blood. She founded a non-profit which has given away millions to support entrepreneurs who work on global poverty, and was a founding board member of another non-profit that tells the stories of marginalized women’s lives. Her work […]

RACGP’s 2015 Guidelines On Graded Exercise Therapy Published In A UK Medical Journal

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  By Laura Beere in Emerge Australia.   Apologies for all the acronyms and brackets in the post below. We’ve tried to make this as clear as possible so that we can keep you informed about a (sadly this time – negative) development that could impact on the treatment and welfare of people with ME/CFS. […]

Care for Someone With Severe Myalgic Encephalomyelitis

Severe ME

By Greg Crowhurst in ME Support.   Linda, my wife, collapsed over two decades ago and very quickly became bed bound. In the months leading up to her collapse, she had had several operations and a long chest infection. For almost two years prior to that she was in constant pain, experiencing severe pins and […]

Disability Comes With An Extortionate And Shocking Price Tag

Samantha Renke

  By Samantha Renke in the Metro.   Do you ever get the feeling you’re being ripped off? Paying over the odds is something every disabled person encounters. Time and time again, we are faced with eye-watering prices for ‘basic’ products and equipment that are labelled as ‘disability’ or ‘specialist’ but have a price tag that is […]

The Emerge Australia Media And Research Digest (028) 26th July 2019

Australia

  Welcome to the Twenty-Eighth Emerge Australia Media and Research Digest! The fortnightly summary of research and media about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) If you’d like the Digest to drop directly into your inbox every fortnight you can sign up for the Digest here. (This will ONLY sign you up for the Digest – this […]

Rambles With Remus

Euan's Guide

    From Euan’s Guide.   Welcome to the first in a series of regular guest blogs by Zoe, a Euan’s Guide Ambassador, and her assistance dog Remus. The two live in Farlie on Scotland’s West Coast and the blog will focus on Zoe’s adventures using an all terrain mobility scooter. Part 1: A New […]

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

Disability

    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 […]

Emerging Insights #1: McGregor’s Grand Conception Of ME/CFS

Australia

  By Cort Johnson in Health Rising.   This is the first in a series of blogs that report on the recent EMERGE conference in Australia. The different conference format – which allowed for long presentations – allowed the presenters to dig more deeply into their topics than usual. Longtime Australian metabolomics researcher Neil McGregor […]

What I Hear When You Tell Me ‘But You Look Fine’

Frustration Chronic Illness

  By Melanie Leong  in The Mighty.   Fairly recently, I had this weird experience where a person with a chronic illness threw the “but you look fine!” line on me. I am pretty certain I didn’t respond. In fact, I don’t really recall what happened afterwards because I was in shock. Isn’t it chronic illness code that we […]

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

Disability

  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 […]

An Apology To My Wheelchair

Wheelchair

    From the Creamcrackered.me Blog, dated 11 March 2019.   Around two weeks ago it was International Wheelchair Day and this got me thinking about my relationship with my own wheelchair and the journey we’ve been on together. So, I decided to write a little something about my new identity as part-time (ambulatory if […]

Please Stop Trying To ‘Fix’ My ME/CFS

Mighty

  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 […]

But Make It Accessible: Wax Poetic Clothing

Natasha Lipman

  By Natasha Lipman.   Hello and welcome to my new blog series “But Make It Accessible”, where I speak to brands that are working to create beautiful and stylish clothes that are also accessible. Rediscovering my love for fashion since becoming a wheelchair user has brought a lot of joy into my life, but […]

Invest In ME Research Newsletter July 2019

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Invest in ME Research is an independent UK charity campaigning for and facilitating biomedical research into myalgic encephalomyelitis (ME). More details of the charity are here.   Clinical trial at Quadram At the IIMEC14 international conference in London in May Professor Simon Carding from Quadram Institute announced the intention to conduct a clinical trial for ME in Norwich […]

The York ME Community – York Inter Company Fantasy Football League For The York ME TGA Shield

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The York ME Community runs an Inter-Company Fantasy Football League sponsored by TGA Mobility. This is to help raise awareness of the illness that affects around 250,000 people in the UK, and 800 in the York area alone. Of those around York, 200 are likely to be severe, meaning house or bed bound. On the […]

Onset: Part III (Connections)

Jen

  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

Spoonie

  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

Scientist using a microscope

  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

emoji-wheelchair

  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

disability

    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

chronic

    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 […]

The Challenge Of Explaining How I Feel As Someone With CFS/ME

Lonely

      By Emma England in The Mighty.   One of the most frustrating things about living with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) is that most of the time, I don’t “look” ill, and so people may not understand the fact that there’s anything wrong with me. CFS/ME falls into the category described as […]

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

Doctor

  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

Disability Dice

  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, […]

Trial By Error: Some Thoughts On MUS And Bermingham; My Letter To Professor Payne

David Tuller

    By David Tuller, DrPH In February, I wrote a post tracking how a core finding from Bermingham et al, a 2010 study, has been misrepresented repeatedly in claims about the costs to the National Health Service of so-called “medically unexplained symptoms.” The misrepresented finding has been cited by proponents of an NHS effort to divert people […]

Action For ME Survey

Survey

        Hi everyone. I’ve received the following from Action for ME and pass it on should you wish to take part: Hello I am getting in touch to introduce myself as Action for M.E.’s Policy and Engagement Officer. A large part of my role is engaging with politicians to improve services and […]

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 […]

Post Twenty Seven. No, I’m Not Tired.

ME

  From the puffins&penguins&me blog.   The ME Association was recently asked by the media to compile a piece describing the difference between having ME and just feeling tired all the time. Given the frustratingly common misconception that ME is ‘feeling tired’, this of course resulted in a lively discussion on their Facebook page, and it prompted […]

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