Disability

Rare Gene Mutations May Be Affecting Energy Levels In ME/CFS

Genetics

  By Cort Johnson in Health Rising.   Dr. Camille Birch has a PhD in biomedical engineering and hails from the Hudson Alpha Institute for Biotechnology at Huntsville, Alabama. Hudson Alpha, only 11 years old, is one of those new biotechnology efforts that’s using sophisticated bioinformatics to understand how our genes affect our health. Dr. […]

Why Are We So Quick To Judge ME/CFS Recovery Stories ?

Recovery

  From A Journey Through The Fog By Jo Moss.   As a community we are very good at supporting each other especially when one of our own is having a particularly bad time with their health. But one thing I’ve noticed, that I find disheartening, is that we don’t give people a safe platform […]

Parents And Children Missing From Their Lives Due To M.E.

Children

  From ME Action.   Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. Parents with ME are missing precious days and years with their children due to the disease, and parents of children with ME are fighting to provide care for their sick children in a world where there […]

Do You Have ICC-ME And Other FAQs

Jen Unrest

  By Jennifer Brea.   I just wanted to respond to a few comments and questions raised in response to recent posts in this series. If you aren’t a part of the ME community, be forewarned, much of the following will be hard to follow! The first set of questions all circle the same core question: do […]

Telford Cyclist Takes On Epic Race To Help Teen With ME

Cycling

    From The Shropshire Star.   A cyclist will take on a challenging 100-mile race through woodlands in support of a bed bound 16-year-old with chronic fatigue. Kind-hearted Arry West, who is 44, will get on his bike for the epic Mountain Mayhem challenge on June 22 and 23 in aid of research into […]

Living With Chronic Fatigue Syndrome

KT King

  By Janet Harrison in The Yorkshire Post.   Living with ME can be severely life-limiting for those affected. KT King, 46, from Hessle, explains what it is like living with myalgic encephalomyelitis, sometimes known as Chronic Fatigue Syndrome. “I first became aware of ME aged 23 when I spent six months in bed after […]

New Test Could Revolutionise Diagnosis Of Chronic Fatigue

Australia

  From 9News.   Aimee De Lurant’s battle with chronic fatigue syndrome often leaves her bed ridden, unable to concentrate or even move. The 25-year-old can’t work and has a limited social life as a result of the condition, which at its worst causes symptoms including excruciating pain and extreme exhaustion. “I can’t get out […]

Spinal Stenosis, Chronic Fatigue Syndrome (ME/CFS) And Fibromyalgia: The Spinal Series #3

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  By Cort Johnson in Health Rising.   The Spinal Series This is part three of a series examining spinal issues which may mimic chronic fatigue syndrome (ME/CFS) and fibromyalgia. The first two in the series involved two very ill ME/CFS patients who have recovered or are recovering following surgery to correct craniocervical instability. Leader in the […]

The ‘Activity Hangover’ I Experience Because of Chronic Illness

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  By Heather Wallace in The Mighty.   As someone who has recently moved to a new town and is trying to figure things out and find my groove, I have been out a lot more than I usually am, and I am paying for it. Having fibromyalgia means things are different for me now. Planning on going […]

The Scandal That Should Force Us To Reconsider Wellness Advice From Influencers

Wellness

    By Chris Rojek in The Conversation.   Former social media influencer and “wellness guru” Belle Gibson first caught public attention after claiming she cured herself of terminal cancer by rejecting conventional medicine in favour of a healthy diet and lifestyle. Her story was documented on a blog and social media, which became the basis for a successful book and […]

Results Of ME/CFS Supplement Poll

Supplements

      From Stories Out Loud.   This is an on-going poll of supplements that ME/CFS sufferers have tried. If you have (or have had) ME/CFS, please tell others your experience by voting. The more people who vote, the more useful it will be. This poll is only intended for supplements you can buy over the […]

21 People Describe What Sensory Overload Feels Like

Sensory

  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 […]

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

Lonely

    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

Australia

    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

Blood Test

    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

Lonely-man

  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

Gaslighting

    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

Adelaide Oval 12 May 2016

    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 […]

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