Disability

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 […]

ME/CFS In Young People: A Primer

Russell Logan

    By Russell Logan in Shout Out About ME.   Leading international me/cfs experts have written a primer for diagnosing and managing the illness in children and adolescents. The new primer lifts the veil on a poorly-recognized disease ravaging our most vulnerable, leaving some children wheelchair dependent, housebound, or bedbound and many more unable […]

Post Seventeen – The PACE Trial Scandal

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    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 […]

Exercise Tests Suggest Autoimmunity Causes The Exertion Problems In Chronic Fatigue Syndrome, Fibromyalgia And POTS

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  By Cort Johnson in Health Rising.   Researchers and doctors get interested in ME/CFS in different ways. Many have a personal connection, but for David Systrom,  a pulmonologist, it was all about demand. He didn’t seek chronic fatigue syndrome patients out – quite the contrary.  When Systrom was given control of a clinical cardiopulmonary […]

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

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    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

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    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

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  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, […]

Trial By Error: My E-Mail Exchange With NICE Chief Executive

David Tuller

  By David Tuller, DrPH.   On Friday, I had an e-mail exchange with Sir Andrew Dillon, chief executive of the NICE Guidance Executive. The other seven Guidance Executive members are various directors within the NICE hierarchy, including the communications director. This group will make the final decision about whether to accept the provisional decision of a […]

The Time Is N.O.W. – National Women’s Advocacy Organization Joins The Fight For ME/CFS

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By Cort Johnson in Health Rising.   This one action demonstrates why it’s so important to have a full-time professional advocate for chronic fatigue syndrome (ME/CFS). The National Organization for Women (N.O.W.) is not a small organization; it has 550 chapters in all 50 states. It’s a natural ally for a disease that’s a) dominated […]

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 […]

Chronic Fatigue Syndrome – A Roadmap For Testing And Treatment

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  Introduction Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) and usually abbreviated to ME/CFS, is a neurological condition characterized by cognitive dysfunction, mood disorders, fatigue, post-exertional malaise, and an array of other symptoms. The following guidelines will help you determine: (1) whether you have chronic fatigue syndrome, and if so: (2) which laboratory […]

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 […]

Disabled Passengers ‘Forced To Wait Hours To Disembark At Heathrow’

Air Travel

    From The Guardian.   Disabled passengers arriving at Heathrow airport are being forced to wait up to two hours for help in disembarking aircraft, the aviation regulator has said. The west London hub is one of four airports where the Civil Aviation Authority judged the service for wheelchair users and other disabled passengers to be […]

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 […]

Major Stanford Study Indicates Chronic Fatigue Syndrome (ME/CFS) Is Inflammatory Disorder

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  By Cort Johnson in Simmaron Research.   There’s been a great deal of controversy and confusion surrounding ME/CFS — even whether it is an actual disease. Our findings show clearly that it’s an inflammatory disease and provide a solid basis for a diagnostic blood test.” Mark Davis There’s nothing like a high-profile study from a […]

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

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  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 […]

Survey Suggests Chronic Fatigue In Canada Is ‘Even Worse Than We Thought’

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    From CTV News.   A new survey suggests chronic fatigue syndrome may be far more prevalent in Canada than previously thought, and more widespread than many more well-known conditions. The suggestion is based on a Statistics Canada survey in which respondents were asked whether their doctor had diagnosed them with chronic fatigue or […]

Metabolic Switch May Bring On Chronic Fatigue Syndrome

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  By Andy Coghlan in New Scientist. It’s as if a switch has been flicked. Evidence is mounting that chronic fatigue syndrome (CFS) is caused by the body swapping to less efficient ways of generating energy. Also known as ME or myalgic encephalomyelitis, CFS affects some 250,000 people in the UK. The main symptom is persistent […]

The Importance Of Having A Partner Who Understands Your invisible Illness

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    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 […]

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