Personal Stories

Airports Are Failing Disabled Passengers, And We Are Tired Of It

Air Travel

    By Elizabeth Wright in The Guardian.   Returning from Rome after a holiday, my plane taxied to its stand and I waited for all the more ambulatory passengers to disembark. I had wheelchair assistance booked – a much-needed service for someone who, like me, struggles to walk long distances – and the drill […]

Post Seventeen – The PACE Trial Scandal

Pace-Study-debunkedrev-330x330

    From the Blog, puffins&penguins&me   I have been wanting to write about The PACE Trial for some time, about the background, the controversy and where we are at today. I have tried, but unlike my usual posts it is very technical, involves a lot of research and there’s a lot to cover. I just don’t […]

Using Mobility Aids When You Have An Invisible Illness

Invisible Illness

    “What happened to you, then?” There’s no ideal time to acquire a long-term chronic illness, but becoming disabled halfway through your undergraduate degree has to be up there in the Least Convenient Life Situations list. Adapting to the student experience whilst learning to live with a painful and debilitating neurological condition isn’t a […]

M.E. Meant This Blog Took Me Several Months To Write

Feeling sad

    By Isabel Walter in Huffpost.   On holiday in the Peak District in June 2007, three months after being diagnosed with ME, I sat down one afternoon with a pile of postcards and discovered I could no longer write. The words were clear in my head, but the pen in my hand made […]

Four In Five Unpaid Carers Socially Isolated Because Of Their Role

caring-for-carers

    By Paul Gallagher in iNews.   Four in five unpaid carers feel lonely or socially isolated because of their role, a new poll suggests. The amount of people struggling to deal with caring rises to 86 per cent for those who provide care for 50 hours or more each week, according to a […]

How A Relapse Of ME/CFS Caused Me To Develop Anxiety

anxiety-is-my-friend

  By Clare Rudderty in The Mighty.   I’m going to tell you something only my husband, parents, sister and one friend know. Why would I share such a secret with thousands of people? Well, I hope having the courage to do so helps some of you know you’re not alone in your experiences. So, […]

Stanford: Scientist Searches For Answer To His Son’s Devastating Condition

Whitnet Dafoe

  By Lisa M. Kreiger in The Mercury News.   As a renowned Stanford scientist, Ron Davis has a deep appreciation for the power of modern medicine. And yet an explanation for the disease afflicting his own beloved son eludes him. Son Whitney, 33, suffers from such severe Chronic Fatigue Syndrome that he is bedridden, unable to […]

The Loneliness Of Having An Illness Science Doesn’t Understand

Julie

  By Lily Carollo in Science of Us.   If someone told you she had something called chronic fatigue syndrome, you might not take her very seriously. Who among us isn’t tired all the time? And yet chronic fatigue is a condition with a name that belies the very serious malady it’s meant to convey. While exhaustion is indeed […]

Have You Experienced Disablism ? Share Your Stories

Disability Dice

  From The Guardian.   We’d like to hear from people who have a disability and have experienced discrimination or hostility because of it. Bullying and discrimination against disabled people remains a serious problem in the UK. According to a recent Equality and Human Rights Commission report“people with disabilities in the UK face harassment, insult and […]

NICE Refuse To Take Down Harmful Treatments 25,000 Children Harmed ?

NICE logo

  By Tina Rodwell.   I had my reply from NICE. For some reason David Hahalam did not want to talk to me. Well I am not important, am I? After all I am just one of the 25,000 parents that would like ME taken seriously to protect the children from harm. A good solid […]

A Plea From A Fallen Doctor On Chronic Fatigue Syndrome (ME/CFS)

Doctor

  From Reddit.   I was educated at Baylor and practiced medicine for 30 years. I had a thriving practice, a rich social life, and excellent physical and mental health. I loved what I did and loved my life. I ran marathons, spoke at conferences, and chaired non-profits. I am now completely bedridden from post […]

The Importance Of Having A Partner Who Understands Your invisible Illness

partner-support-300x220

    By Hattie Gledwell in The Metro.   One of the most important aspects of being in a relationship when you have an invisible, chronic illness is that your partner is supportive.  There are a number of reasons for this, but it all mainly comes down to the fact that if your partner doesn’t understand what […]

Severe ME Day 2017; Sophia Mirza, Inflammation Of The Brain And Spinal Cord And The Role Of The Gut

Sophia Mirza

  From Let’s Do It for Myalgic Encephalomyelitis.   Severe ME day is an initiative of the 25% ME group for the severely affected. It is held annually on 8th August to commemorate Sophia Mirza’s birthday and it’s purpose is to remember and raise awareness of those deceased and severely affected by ME. Sophia Mirza (1973 – 2005) died in […]

Jobcentre Staff Criticised For ‘Alarming Lack Of Confidence’ With Disabled People

Job Centre Plus

    By John Vale in Care Appointments.   Staff at Jobcentres have an “alarming” lack of confidence dealing with disabled people just weeks ahead of new welfare reforms coming into force, campaigners have warned. Phil Reynolds, co-chairman of the Disability Benefits Consortium, said it was important disabled people were not “shoehorned” back into work […]

8 August: Understanding And Remembrance Day For Severe Myalgic Encephalomyelitis

ME Drained

    By Jody Smith in Phoenix Rising.   August 8th, is Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis, an important day in the ME community. It’s a day that is intended to bring attention to those whose voices are the most quiet, whose presence is so easily overlooked. Their footprint leaves next to no mark. […]

This Is Why I Quit Exercise Therapy

Walking

  By Camilla Maxted in BuzzFeed.   It took 11 medical appointments across 20 weeks of pain and despair before I finally got a diagnosis. For months, I’d been suffering from exhaustion so extreme that bit by bit, I’d had to let my whole life drop away. For a long time I tried to ignore it – after all, […]

5 Tough Choices You Face When You’re Chronically Ill Or In Pain

Mighty

  By Toni Bernhard in The Mighty.   Having chronic pain or illness — or, as is often the case, both — is hard work. One reason for this is that we must constantly assess and evaluate if we’re managing our health and our relationships skillfully. This requires us to make tough choice after tough choice. Here are five […]

Feeling Powerless In The Face Of Another’s Unsolvable Suffering Can Lead Us To Turn Away But Actually You Can Always, Always Help

Listening

  by Lucy Mayhew in Medium. Seven years ago all semblance of functional life was eviscerated when my health collapsed. I am wary of outlining my circumstances because someone wise once told me humans can’t deal with more than three lines of self-pity without the counter-balance of some kind of redemptive conclusion. My story does […]

Body Count: The Tragic Stories Of Severe ME – Commemorating Severe ME Day On August 8

Severe ME

  By Russell Logan in SHOUTABOUTME.   “…the opposite of life is not death, it’s indifference” — Elie Wiesel They’re known as the ‘invisible’ ones, the severe Myalgic Encephalomyelitis (ME) patients that governments, doctors, researchers and communities refuse to acknowledge. The US CDC even renamed the illness Chronic Fatigue Syndrome (CFS) after a single symptom ‘fatigue’ to deliberately […]

Meet The Woman Trying To Get Disabled Mannequins Into The Windows Of Britain’s Biggest Shops

Sophie-Morgan-3

  By Sara Spary in BuzzFeed News.   It’s 2017 and disabled shoppers are still being “ostracised” from the high street thanks to a lack of access. Meet the woman who thinks it’s time to change that for good. Sophie Morgan, a 32-year-old TV presenter, was shopping in London’s busy Covent Garden recently when she […]

The York ME Community © 2015