Disability

Surviving, (Hiding), And Thriving With Cognitive Impairments

Lisa

  From the Chronic Illness: Realistic Optimism Blg y Lisa Alloto.   As the years have gone by with Myalgic Encephalomyelitis (ME), the cognitive impairments have grown.  My brain is slower to process information and conversations.  For example, it takes longer to find the right word, to remember someone’s name, and quite often to even to […]

Filling “The Landscape Of Unmet Needs” In ME/CFS and FM: The Bateman Horne Center Pt 1

Cort_Johnson

    By Cort Johnson in Health Rising.   This is the first of a couple of blogs that will celebrate visionaries within the ME/CFS/FM communities who took action to make their visions real. Dr. Bateman was doing yeoman’s work serving the ME/CFS/FM community in her medical practice in Salt Lake City, Utah.  She could […]

Not All Disabilities Are Visible……..

Invisible Illness

One of my favourite Christmas presents this year, a sticker for the car from my wife and daughter…… There is a need for a Government backed, nationwide TV and Radio educational campaign to raise awareness of Invisible Illnesses and Disabilities.    

Humans of ME/CFS – Keith B

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From Solve ME/CFS Initiative. My ME/CFS story is 30 years long. It began in 1985 when I was stricken with a virus that never left and evolved in its effects. In the early days, I had to go back to bed after cleaning my teeth. Now, fatigue is not so much a problem but still […]

Deconditioning Denied: Could A Large ME/CFS Study Put An End To The Deconditioning Myth ?

johnson_cort

  By Cort Johnson in Health Rising. The Deconditioned ME/CFS Patient? A huge (n=345) 1998 UK study set the stage. The smaller, less muscular hearts and carotid arteries found in ME/CFS made it clear – at least to those researchers – that both physical and cardiovascular deconditioning was present in ME/CFS. They recommended a graded exercise program to […]

Do You Have Family Or Friends You Haven’t Heard From In A While ?

'Hello Stranger'

    At this time of year we hear the cry go up for keeping in touch with family and friends.  Maybe to also call on someone elderly nearby. Whilst I totally agree with these sentiments, maybe we should be doing this throughout the year.  It’s too easy to forget those who were in our […]

Trial By Error: Australian Draft Report Seeks Comments

David Tuller

    By David Tuller, DrPH in Trial By Error. In an eagerly awaited draft report, an Australian advisory committee on ME/CFS has called for the development of up-to-date domestic clinical guidelines and an increase in biomedical research into the pathophysiology of the illness. The draft report, which could have a major impact on health policy […]

Christmas Can Be Isolating For Young Carers – They Need Time To Be Children

Young-Carers

    By Jo Aldridge in The Conversation.   Most children look forward to the Christmas holidays as a time for fun and families. But for some young carers – children who provide care for someone in their family who is ill or disabled – the Christmas holidays are a mixed blessing. Dani* is one […]

Life With A Chronic Illness: The Unspoken Truths

Lisa

  By Lisa  Alloto in her Chronic Illness: Realistic Optimism Blog.   Life with any chronic illness is filled with unending challenges, whether its finding proper medical care, a way to afford it and your daily expenses, or maintaining employment.  On top of that, and most of all, you must deal with the chronic illness itself […]

2018 Ramsay Class Receives Supplemental Funding To Support Innovative Projects From New Investigators

Funding

    From Solve ME/CFS Initiative.   Solve ME/CFS Initiative (SMCI) is pleased to announce that we have received funding to support additional Ramsay studies for the 2018 Ramsay Award Program Class that will be led by Dawei Li, PhD, an Assistant Professor at the University of Vermont, and Malav Trivedi, PhD, an Assistant Professor at Nova Southeastern University. Both Dr. Li […]

Making The Outdoors Accessible To All

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By Scout Ambassador, Julia Bradbury in Scouts. Scout Ambassador Julia Bradbury’s TV presenting has taken her all over the world, walking and climbing across Europe and Africa. Now she tells us all about The Outdoor Guide – an online resource she set up with her sister Gina that brings together information for walks all around […]

Trial By Error: The New Interferon “CFS” Study

David Tuller

    By David Tuller, DrPH I haven’t had time to cover the new and wildly over-hyped study about prolonged fatigue–and purportedly about “chronic fatigue syndrome”–that was published this week in the journal Psychoneuroendocrinology. Thanks no doubt to the involvement of the Science Media Centre, this mildly interesting piece of research has received widespread media attention. […]

Community Roundup – End-Of-Year, 2018

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From #MEAction.   As always, our community continues to amaze us with its tenacity, creativity, intellect, hard work and generosity. Enjoy a round-up of some of the community happenings these past few months where people with myalgic encephalomyelitis (ME) around the world continue to fight for recognition, treatment, care and dignity. Austrian broadcast station @ATV […]

When You’re Stuck In The Middle Of ‘Sick’ And ‘Well’

Chronic

  By Cherilyn Schutze in The Mighty.   Stuck in the middle of sick and well. That’s how I feel. Chronic illness is never easy, whether you are the person who’s sick, or the caretaker or family member of a person with a protracted illness. Before I became ill, I was very busy multi-tasking, care-taking, mothering, wife-ing, and working. […]

Trial By Error: How BMJ Enabled Bristol’s Ethics Exemptions

David Tuller

      4 DECEMBER 2018 By David Tuller, DrPH Earlier today, I sent the following e-mail to Dr Fiona Godlee, editorial director of BMJ. I cc’d Carol Monaghan MP, Darren Jones MP, and Nicky Morgan MP. I also cc’d Teresa Allen of the Health Research Authority. ********** Dear Dr. Godlee— As you know, I […]

Thinking Of Others……

manyadventuressfw

      It occurred to Pooh and Piglet that they hadn’t heard from Eeyore for several days, so they put on their hats and coats and trotted across the Hundred Acre Wood to Eeyore’s stick house. Inside the house was Eeyore. “Hello Eeyore,” said Pooh. “Hello Pooh. Hello Piglet,” said Eeyore, in a Glum […]

Inside The Mind Of A Chronically Ill Person Debating If They Should Post On Facebook

Facebook

  By Jennifer Steidl in The Mighty. Nobody is “normal.” Everyone is unique. That said, long-term illness can change a person; it can change your mind, your emotions, your perspective, your way of thinking… (to say nothing of your body). And the places in your mind that change can be impossible to perceive; what is caused by […]

Things Like This Stop Me From Living My Life The Way I Want To

Taxi

By julieannereynolds in Scope. Bal is a post graduate student at Staffordshire University, disability activist, former President of their Student Union and has Generalised Dystomia. In this blog Bal shares her campaign story to ensure taxi fares charge the same for all and how she helped change the law. In 2015 I led a campaign to […]

Overactive Immune System ‘May Trigger ME-Like Symptoms’

BBC News

  By Laurel Ives, BBC Health. An overactive immune system may help explain the cause of chronic fatigue syndrome, scientists from King’s College London have suggested. Many sufferers of CFS, or ME, say their condition began with a challenge to their immune system like an infection. The scientists studied 55 patients with Hepatitis C who were […]

Trial By Error: The View From Norway

David Tuller

    By David Tuller, DrPH. I spent the last week of November in Oslo. The Norwegian ME Association invited me to give a couple of talks and have some meetings with public health officials. The city was charming, even if dark and overcast at this time of year. Not surprisingly, the same tussle taking […]

9 Rounds Of Electroshock Therapy. 6 Years Lost. All Because Her Doctors Got It Horribly Wrong

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    By Michele Lent Hirsch in Cosmopolitan.   She’s lying on a gurney in a white room, a blanket covering her body, an IV pinched into her arm. A nurse is sticking electrodes to the side of her head, like stickers. Soon they’ll send electric currents into her brain, inducing a seizure. She’s aware […]

THE YORK ME COMMUNITY – YORK INTER COMPANY FANTASY FOOTBALL LEAGUE FOR THE YORK ME TGA SHIELD – UPDATE !

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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 […]

Death in Chronic Fatigue Syndrome (ME/CFS) – What Has It Told Us ? The Autopsy Files

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    By Cort Johnson in Health Rising.   It’s always hard to lose a loved one, but the deaths in ME/CFS seem particularly hard. They tend to be quite painful, they often take place in the midst of a non-supportive medical system, and they’re a complete mystery. With no seeming way out it’s no […]

Ruins: An ME Senior’s Perspective

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  By Eileen Rosenbloom in #MEAction. You might think aging with myalgic encephalomyelitis (ME) is a seamless dance where an illness catches up with a stage of life. As people age with their own set of ailments, you’d hope this latter stage would offer a welcome mat of normalcy. Our healthy peers would like us […]

Tragedy In Bjärred – Increased Knowledge About ME Is Needed

Sweden

  From The National Association for ME patients.   In January 2018 a tragedy occurred in Bjärred, a family found deceased in its villa. Today, the police reported that parents chose to end their own and daughters lives and that both girls had been diagnosed with ME. RME deeply deplores the tragic development, our thoughts go […]

Living In A World Apart

Christmas

  By Suzan L. Jackson in ProHealth.   Holiday season is upon us, and that fills me with dread because it means lots of visits with extended family who see us only rarely. Our invisible illnesses become even more invisible at these times. I have been able to improve my condition and my son’s greatly […]

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome In The Era Of The Human Microbiome: Persistent Pathogens Drive Chronic Symptoms By Interfering With Host Metabolism, Gene Expression, And Immunity

Scientist using a microscope

      By Amy Proal and Trevor Marshall in Frontiers in Pediatrics.   The illness ME/CFS has been repeatedly tied to infectious agents such as Epstein Barr Virus. Expanding research on the human microbiome now allows ME/CFS-associated pathogens to be studied as interacting members of human microbiome communities. Humans harbor these vast ecosystems of […]

Disabled Peer Calls For ‘Heavy Fines’ For Air Travel Access Failures

Air Travel

By John Pring in Disability News Service. A disabled crossbench peer has called on the government to start handing out “heavy fines” to the air travel industry when it fails to ensure that its services are accessible to disabled passengers. Baroness [Jane] Campbell asked the government on Monday what action it was taking to encourage all UK […]

Accurate Diagnosis Of Myalgic Encephalomyelitis And Chronic Fatigue Syndrome Based Upon Objective Test Methods For Characteristic Symptoms

Doctor

  By Frank NM Twisk in World Journal of Methodology. Abstract Although myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are considered to be synonymous, the definitional criteria for ME and CFS define two distinct, partially overlapping, clinical entities. ME, whether defined by the original criteria or by the recently proposed criteria, is not equivalent […]

UN Day Of Disabled People: Government Could Face Court Over Universal Credit

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  By John Pring in Disability News Service.   The government could be forced into court to defend its failure to make the much-criticised universal credit benefit system accessible to disabled people. A parliamentary meeting held to mark the International Day of Persons with Disabilities (IDPD) on Monday – and to call for universal credit […]

Nationwide Joins Purple Light Up Movement To Recognise Contribution Of Disabled Employees

Disability

  By Sid Hayns-Worthington in the Swindon Advertiser.   The society’s Employee Disability Network organised sessions at the HQ to have open conversations about obsessive compulsive disorder, dementia, understanding anxiety and stress, and also included a mental health resilience workshop. The company held around 35 events across the country, coinciding with International Day of Persons with Disabilities […]

Motability Charity Boss To Go After Extra Bonus Revealed

Motability Logo

    From BBC News.   The boss of Motability Operations is to step down by 2020 following criticism over his pay and a scathing review from the government’s spending watchdog. The report from the National Audit Office revealed Mike Betts was in line for an extra £1.86m bonus on top of already “generous” pay. The […]

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