Disability

Myalgic Encephalomyelitis (ME/Chronic Fatigue Dyndrome), Does It Have A Biomechanical Component ?

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  By Kjetil Larsen in Trening Og Rehab.   Myalgic encephalomyelitis (ME) is one of medicine’s grand mysteries. Its etiology is not known, and patients afflicted are rarely documented to recover from their ailment. Its diffuse presentation includes many symptoms, which implies that ME is actually an «umbrella diagnosis» for several underlying problems. One of the problems […]

Struggling To Accept The Days When Illness Keeps Me From Doing Anything

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  By Sally Doherty in The Mighty. I’ve had some of those awful days recently (they happen now and then, and more often than I’d like). You know the type: days when instead of your bed being somewhere that you go to rest, your bed becomes a prison that you can barely get out of. […]

We Desperately Need To Be Able To Diagnose ME At Earliest Stage

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  From IOM Today. News from The Isle of Man.   Former government minister Phil Gawne has issued a plea to the Health Minister to try harder to give people with ME the service they need. Mr Gawne was speaking after Health Minister David Ashford told the House of Keys last week that money allocated […]

Concerns About Craniocervical Instability Surgery In ME/CFS

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By Michiel Tak in Science For ME.   CCI/AAI has little in common with ME/CFS Three ME/CFS patients, Jeff, Jennifer, and Matt, have reported spectacular improvements of their ME/CFS symptoms following surgical interventions for craniocervical instability (CCI) and atlantoaxial instability (AAI). CCI refers to increased mobility and instability of the craniocervical junction, the transition between […]

Thank You + More To Come

Jennifer Brea

    By Jennifer Brea.   On Monday, I shared that after three neurosurgeries, my ME is in remission. I have to admit , it was scared to “come out” about my improvements. I wasn’t sure what the reaction would be. Skepticism? Grief? Anger? My own feelings about my remission are complex. And I don’t know how […]

This Chronic Syndrome Affects Mainly Women & Is Really Hard To Diagnose

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By Katy Fallon in Refinery 29.   When I was a teenager, my mother fell ill with M.E. and I saw her struggle to get her symptoms recognised – even though she was a doctor herself. Myalgic encephalomyelitis (M.E.) is a chronic condition which affects 250,000 people in the UK and around 17 million people […]

Falkirk Girl Shares ME Experience On 16th Birthday

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    By Charlene Wilson in The Falkirk Herald.   A Falkirk ME patient who claims she was labelled a ‘lazy teenager’ by her GP has chosen to celebrate her 16th birthday by raising awareness about her condition. Hannah Sweeney was diagnosed with Myalgic Encephalomyelitis, more commonly known as ME, when she was just 14. […]

Louisa’s Fight For NDIS Chronic Fatigue Syndrome Support

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    By Dixie Sulda in The Advertiser.   Louisa Stocco is almost too exhausted to fight her own battle. The 21 year old was diagnosed with Chronic Fatigue Syndrome (CFS) three years ago, after she collapsed from exhaustion while touring with a performing arts company. Since then, her physical and mental fatigue has stopped […]

Mattie’s CCI Journey – After 3 Years With ME

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  From Mechanical Basis.   An interview between Jeff and Mattie who has undergone a CCI Fusion operation in the hope of reversing ME.   Mattie is a 47 year old web developer. He lives in a small town in the Netherlands with his wife, his 17 year old son, and their two golden retrievers. Mattie […]

My Favourite Chronically Ill Entrepreneurs

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    By Pippa in her Life Of Pippa blog.   I once saw a quote reading “when you buy from a small business, an actual person does a little happy dance”, and it really stuck with me. I absolutely love the sentiment of supporting independent creators, all the more so when I know they’re […]

Health Update #3: My ME Is In Remission

Jennifer Brea

  By Jen Brea. This is a hard post to write because there are no words that can do this justice. I can hardly believe it myself. My ME is in remission. For the first few years that I was ill, I dreamt of being able to say this. I fantasized about what recovery would […]

Blood Test May Detect Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

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    From The National Institutes Of Health.   At a Glance Researchers developed a blood test that, in a pilot study, accurately identified people with myalgic encephalomyelitis/chronic fatigue syndrome. If validated in larger studies, the assay could one day help diagnose the disease and enable researchers to test potential treatments.   Myalgic encephalomyelitis/chronic fatigue […]

Mast Cell Activation Syndrome & Low Blood Volume

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    From Syndrome A.   Summary Two symptoms occur frequently in people with ME/CFS: Mast Cell Activation Syndrome (MCAS) and low blood volume. What if these are not coincidental? Reading time: 4 minutes 27 seconds People with ME/CFS have less blood than we should. We have low blood volume. We also tend to have a condition […]

The International Consensus Criteria For ME

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      From ME Advocacy.   Revised November 14, 2016 to include steps to evaluate for atypical ME as defined by ICC. MEadvocacy.org understands there is a great deal of confusion about the various criteria for myalgic encephalomyelitis, so we created an easy to follow questionnaire to help patients see if they may fit […]

Trial By Error: A Plea To Fiona Godlee On A Familiar Topic

David Tuller

  By David Tuller, DrPH On Wednesday, I sent the following to Dr Fiona Godlee, editorial director of BMJ. The topic, once again, was the ethically and methodologically challenged Lightning Process study, which was published two years ago in Archives of Disease in Childhood, a BMJ journal. My letter was prompted by the recent appearance […]

Severe ME: I Had To Fight The People Supposed To Help Me

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    by Sam* In ME Australia.    Sam (*not her real name) is a teenager living in Australia’s largest city without access to treatment to help her. Sam was prescribed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) repeatedly. After doing GET, Sam became housebound. Sam now has very severe ME and says […]

Better Treatment Needed For 77,000 British Columbians With ME

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  By Sue Khazaie in The Province.   Imagine you are living the life of your dreams. You have a great job, a happy marriage and love traveling. And then you get sick. Really sick. Soon you can’t work, go out, or perform basic household chores. Within weeks, you are bedridden and totally dependent on […]

We Cannot Continue To Let Doctors ‘Gaslight’ Chronic Illness Patients

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    By Siobhan Simper in The Mighty.   Author’s warning: This post contains experiences of gaslighting and abuse. Recently, I saw an all-too-common meme on social media: the inspirational disabled person. The image was of a Paralympic horse rider, with the caption, “no excuses.” Much has been written about the problematic nature of disability “inspiration porn.” What shocked me was when I […]

Opera And Disability

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  Q&A with Jacqueline Ko.   May 12th is the International Awareness Day for chronic neuroimmune diseases. To shine a light on these extremely prevalent yet little-known conditions, I caught up with performer, producer and disability advocate Jacqueline Ko, an award-winning Canadian soprano and co-founder of Opera Mariposa who has lived with the neuroimmune disease […]

He Pioneered Technology That Fueled The Human Genome Project. Now His Greatest Challenge Is Curing His Own Son

Ron Davis

    By Ryan Prior CNN.   (CNN)Multiple times a day, every day, Ron Davis sits with his head bowed, waiting outside his son’s bedroom for a subtle signal that it’s all right to come in. He opens the door to the space where Whitney has spent most of the last decade. Whitney lies motionless […]

Adelaide Oval Lights Up In Blue For ME Awareness Week

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    By Jac Creedon in ME Australia.    Since 2015, Adelaide Oval in South Australia has been lit up in blue in recognition of ME Awareness. This year, it will be illuminated on Thursday May 9. It has been organised every year by Jac Creedon, who has had ME for 28 years. Jac lives […]

ME Awareness Day – 12 May 2019

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  On this, our ME Awareness Day,  I would like to thank all those who have used their  limited energies to try and get the message out about the millions of people worldwide who are dealing with ME.   There are too many towns, cities and people to mention, but I can only hope that […]

Why ME And CFS Instead Of ME/CFS ?

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    by Sasha Nimmo in ME Australia.  Why is it important to use ME and CFS? It’s time, Australia needs to leave behind ME/CFS and CFS/ME and adopt the International Consensus Criteria for ME. ‘ME and CFS’ captures an audience who have been diagnosed with chronic fatigue syndrome, as some patients who have been diagnosed with CFS […]

Saving Money On Theatre Tickets As A Disabled Young Adult [AD]

Pippa

  By Pippa, in Life Of Pippa.   This post and associated social media posts are kindly sponsored by Triple 7 Events. Find out more about them and book some bargains on their website here [AD]. Let’s be honest: being a theatregoer certainly isn’t the most affordable hobby in the world, particularly as a disabled young person. Whilst […]

19 Things People With ME/CFS Wish Others Understood

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      By Paige Wyant in The Mighty.   Have you ever told someone about your ME/CFS, only for them to respond, “I understand, I’m always tired, too”? Though friends and loved ones may be well-intentioned, it can be frustrating and hurtful when they just don’t “get it.” The reality is that ME/CFS is […]

THE YORK ME COMMUNITY INTER COMPANY FANTASY FOOTBALL LEAGUE

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THE YORK ME COMMUNITY INTER COMPANY FANTASY FOOTBALL LEAGUE   It’s not only the Premier League that won’t be decided until the last day ! Our Inter Company Fantasy Football League which involves local businesses supporting ME Awareness will also be decided this weekend.   You might have missed out on your chance over the […]

Understanding ME And Chronic Fatigue Syndrome In Children

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  By Claire Tripp in teachwire.   Longterm and little-understood illnesses like ME, or chronic fatigue syndrome, can leave pupils misdiagnosed, isolated and forgotten, so it pays to spot the signs, says Claire Tripp…   You leave work with “Miss! Miss!” still echoing in your ears, an armful of marking, and thinking of Ellie. Once […]

The £4.2 Million Worth PACE Trial – High Hopes, Deep Fall

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    From #FindME.   Do you trust your GP to give you the right diagnosis and treatment you need whenever you feel ill? Yes, most people do! But what if your GP fails to give an accurate diagnosis and worse, prescribes the wrong therapy? This is exactly what happened in the UK based on […]

York To Be Lit Up In Blue For ME Awareness !

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  It has been confirmed by City of York Council that the City Walls and Clifford’s Tower will be lit up in blue for ME Awareness from the 10th to 13th of May. The Council will also be putting out Press Releases to cover the event.

These Are The Sheffield Landmarks That Will Be Turning Blue To Mark ME Awareness Week

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    By Stephanie Bateman in The Star.   Landmarks across Sheffield are set to turn blue this weekend. On Saturday, March 11, the Peace Garden fountains will be turning blue alongside many different monuments such as York City walls, the fountain in Geneva, and nine landmarks across the Netherlands including the Rotterdam Bridge to represent ME […]

‘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 […]

You Don’t Look Sick: ‘People Say ME Isn’t Real But Trust Me – I Deal With It Everyday’

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    By Laura Abernethy in The Metro.   Over 13.9 million people living in the UK are disabled, but many people live with conditions that you can’t always see. They struggle with symptoms every day but when you see them in the street, you would have no idea that anything is wrong. You Don’t […]

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