Disability

Disabled Actress Samantha Renke – What Does Accessibility Mean To You ?

Samantha Renke

By Samantha Renke in AccessAble.   With almost 14 million disabled people living in the UK and as the fastest growing minority group, creating a world that is more accessible has never been more prevalent. Not to mention that excluding the disabled people from the consumer market is a big financial mistake as disabled people […]

A Town For People With Chronic-Fatigue Syndrome

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      By Mike Mariani in The New Yorker. September 3, 2019   Patients moved from all over the country to Incline Village, Nevada, for an experimental drug. Then the drug disappeared.   In December of 2012, I came down with what at first looked like a bad case of mononucleosis. I felt tired and had […]

Invest In ME Research Newsletter – August 2019

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    Invest in ME Research is an independent UK charity campaigning for and facilitating biomedical research into myalgic encephalomyelitis (ME). More details of the charity are here.   To read the Newsletter, click on the link below:   Link to Invest in ME Research Newsletter

Living With Chronic Fatigue Syndrome

Australia

    On Nightlife with Philip Clark.   CFS is considered to be a complicated disorder which is not only difficult to diagnose but also has no effective treatment. Estimates show that about 1% of the Australian population which is about 250,000 people suffer from it and many of those suffering from it are unable […]

The Struggle Of Identifying Pain

ChronicPainManagement

    By Lindsay Glenne.   How do you know when to seek help? When you have a chronic illness, it’s really hard to differentiate between your usual pain, and something new. With an illness like fibromyalgia, it can sometimes be even harder. It effects every single part of your body and a flare can […]

From Infectious Disease Specialist To ME/CFS Expert: Dr. Bela Chedda Talks

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  By Cort Johnson in Health Rising.   Dr. Chheda’s Road to ME/CFS I met Dr. Chheda of the Center for Complex Diseases at Ron Davis’s Working Group Meetings funded by the Open Medicine Foundation. She graciously agreed to talk more about how she approaches treating ME/CFS in her practice. I was particularly eager to talk to […]

How Do I Know If I Need A Wheelchair ?

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  From How To Get On.   Many people with Myalgic Encephalomyelitis or “Chronic Fatigue Syndrome” find that too much physical activity can make their condition worse. Sometimes permanently. Pacing, resting, and using equipment like wheelchairs and scooters can be important tools in helping yourself. How do you know when the time has come? Stories and […]

Consultation Regarding Accessibility at Clifford’s Tower Area York

Clifford's Tower

  As you may know, a consultation process is under way with regard to the revamping of Clifford’s Tower area of York. This week I was invited by English Heritage to add my input with regard to accessibility for the area. The revamp will include removing the car park currently alongside the tower, which is […]

Myalgic Dncephalomyelitis (Or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis And Management

NICE

      Call for evidence   What we need We need evidence from the areas listed below for the guideline we are developing on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: 1. Studies that evaluate: Management strategies that are adopted while someone is being assessed for a diagnosis of ME/CFS. Methods of monitoring and/or reviewing […]

Cortene To Move Forward On New Drug For Chronic Fatigue Syndrome (ME/CFS)

Cortene

  By Cort Johnson in Health Rising.   In February of last year, Health Rising announced an unusual event was going to take place: a small drug company named Cortene was going to trial a new drug for chronic fatigue syndrome (ME/CFS). Cortene’s trial was unique in a number of ways. For one, it involved ME/CFS […]

Mechanical Page Turners To Seeing AI: A Brief History Of Accessibility Tech

accessibility

  By Heidi Scrimgeour in The Guardian Labs.   Cumbersome machinery has been replaced with unobtrusive, empowering innovations in the world of assistive technology. Heidi Scrimgeour charts its evolution. Assistive technology is transforming the lives of people with disabilities. But what’s perhaps more remarkable is the fact that you probably haven’t noticed. The unobtrusive nature of the technology demonstrates […]

ME/CFS Seahorse Energy Production Study Shows Surprises

Research

    By Cort Johnson in Simmaron Research.   Dr. Maureen Hanson leads one of the three NIH funded ME/CFS research centers, but her ME/CFS research doesn’t stop there.  Using samples from Dr. Daniel Peterson provided by the Simmaron Research Foundation, she’s also been assessing the metabolism of one of the most important cells in […]

Trial By Error: An Open Letter To Dr Godlee About BMJ’s Ethically Bankrupt Actions

David Tuller

      By David Tuller, DrPH I have sent the following letter to Dr Fiona Godlee, editorial director of BMJ, about Archives of Disease in Childhood’s egregious decision to re-publish Bristol University’s Lightning Process trial with the original findings intact. Given the Bristol team’s flagrant methodological violations, the journal should have retracted the paper. […]

Fatigue, Sleep, And Autoimmune And Related Disorders

Fatigue

    Mark R. Zielinski1,2*, David M. Systrom3,4 and Noel R. Rose5 1Veterans Affairs Boston Healthcare System, Boston, MA, United States 2Department of Psychiatry, Harvard Medical School, Boston, MA, United States 3Department of Medicine, Harvard Medical School, Boston, MA, United States 4Department of Pulmonary and Critical Care Medicine, Brigham and Women’s Hospital, Boston, MA, United States 5Department of […]

Why Having ME/CFS Makes Me Dread The Summer

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    By Jo Moss in A Journey Through The Fog.   After I read the news that the temperatures in the UK were going to reach 27 degrees this week, my anxiety levels rose dramatically and panic set in. I hoped I would having longer to adjust to the summer – what happened to […]

GABA and Glutamate in Fibromyalgia and Chronic Fatigue Syndrome

Human head and brain. Different kind of waveforms produced by brain activity shown on background. Digital illustration.

  By Adrienne Dellwo in Very Well Health.   GABA and glutamate are neurotransmitters—chemical messengers in your brain. One is calming, one is stimulating, and they’re supposed to stay in balance with each other. So what happens if this balance is thrown off?​ Some research suggests an imbalance of these two substances may play a role […]

Marijuana As Medicine For ME/CFS And FM III: Cannabis – More Than Just THC And CBD

Medical-Marijuana

    By Cort Johnson in Health Rising.   For the relief of certain kinds of pain, I believe, there is no more useful medicine than Cannabis within our reach. Sir John Russell Reynolds 1859. This is the third part of a five-part series on the use of Cannabis in chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). […]

Chronic Illness & Grief

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  By Jo Moss in A Journey Through The Fog.   Each month a fellow blogger (A Chronic Voice) hosts a ‘Link-up party’. It is a monthly get-together for anyone with a chronic illness. An opportunity to share, to listen, and to learn from one another. It’s a great way to provide insight into life with […]

My Invisible Illness Just Became Visible And Here’s Why

Lisa

  By Lisa Alloto in Realistic Optimism.   I have an invisible illness, meaning you cannot see it, but it’s oh, so present for me every minute of my life. I’m constantly exhausted, in pain, have a variety of cognitive deficits, vision loss, light, sound, and temperature sensitivities, a weakened immune system, and many, many […]

A Love Letter To Anyone Who Struggled To Shower Today

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    By Sarah Mariann Martland in The Mighty.   This is a love letter to all those for whom showering is repeatedly a laborious exercise, physically, emotionally or both. To those who spend days putting it off because you know just how exhausting or painful it feels, right down to your bones, just to stand under the […]

Government Of Canada Invests $1.4M In Biomedical Research To Improve The Quality Of Life Of People Living With Myalgic Encephalomyelitis

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    From: Canadian Institutes of Health Research MONTRÉAL, August 22, 2019 – It is estimated that more than 580,000 Canadians live with myalgic encephalomyelitis (ME), formerly known as chronic fatigue syndrome, or ME/CFS. This poorly understood, multi-system disease is debilitating and can strike individuals of all backgrounds and at any age. Patients experience symptoms including unrelenting exhaustion […]

Trial By Error: Joan McParland’s Lightning Process Experience

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    By David Tuller, DrPH.   Aura-reader and Tarot expert Phil Parker, also known as the founder of the Lightning Process, has posted a video on YouTube of an “ME/CFS success story.” Without knowing anything about Amy’s situation or medical history beyond what she shares, I have no reason to disbelieve her testimony of […]

Musings Of A Police Officer On A Diagnosis Of ME/CFS

Disabled Police Association

  By Colin Paine in Disabled Police Association.   Colin Paine is a Detective Chief Superintendent in Thames Valley Police. He is currently working on the Police Spending Review with the NPCC. Here he reflects on his diagnosis of Myalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS). Police work feels inherently fast paced. It is in the nature of our […]

Trial By Error: My Interview With Melbourne’s Dr Don Lewis

David Tuller

  By David Tuller, DrPH.   When I visited Melbourne in March of last year, I heard a lot about Dr Don Lewis, a local physician beloved by those with ME—or “chronic fatigue,” as Australian patients, scientists and clinicians routinely called the illness, to my dismay. At the time, Dr Lewis was transitioning out of […]

U.S School Nurses, Teachers & Counsellors Can Now Take Continuing Education Course About Pediatric ME/CFS

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  From #MEAction.   School nurses, counselors, social workers or teachers in any U.S. state can now earn earn 3.25 Continuing Education credits (CNE) for completing a course on pediatric myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). The course is titled, ““Why Can’t This Child Get to Class? Learn How ME/CFS Keeps Youth from Attending School.” The course features Dr, […]

Ten Top Tips For Accessible Recruitment

Accessibility

        By Jo Verrent in Unlimited.   Unlimited, in its current form, has been recruiting for disabled trainees since 2013. What have we learnt about accessible recruitment? Jo Verrent, Senior Producer for Unlimited, gives us her top ten tips… Target where you advertise – find out where disabled people might be, and go […]

Leaving Frailty Behind. A Conversation With Laura Hillenbrand

Laura Hillenbrand

  By Paul Costello in Stanford Medicine.   She is an author of extraordinary success. Laura Hillenbrand’s Seabiscuit and Unbroken are literary phenomenons: Together, there are more than 13 million copies in print, and both have been made into blockbuster motion pictures. Seabiscuit, published in 2001, tells the story of a racehorse that captured America’s heart during the Great Depression. Unbroken, […]

Is The Brain Causing The Small Fiber Neuropathy In Fibromyalgia (And ME/CFS ?)

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    By Cort Johnson in Health Rising.   It seemed ever so clear. The reduction in the number of small nerves in the skin and eyes of roughly forty percent or so of the people with fibromyalgia (FM) and chronic fatigue syndrome (ME/CFS) must bring the body – as opposed to the brain – into […]

More Than Half Of Disabled Passengers Still Find Air Travel Difficult, Says Regulator

Air Travel

    By John Pring in Disability News Service.   More than half of passengers who describe themselves as having an impairment that limits their day-today activity find travelling by air difficult, according to a regulator’s annual report on access at the UK’s major airports. The Civil Aviation Authority’s (CAA) annual report on disability access contains […]

My Disabilities Are Invisible. I Shouldn’t Have To Prove Them To Strangers

Invisible Illness

  By Isabelle Jani-Friend in The Guardian.   I was recently on a packed Central line train into London. Luckily, I managed to take the last priority disabled seat. My osteoporosis and the fatigue I experience meant it would be hard for me to stand for the 40-minute journey to Oxford Circus. I felt a […]

Pacing Is A Simple Concept. So Why Do I Find It So Hard ?

Lost

    By Jo Moss in A Journey Through The Fog.   Living with a chronic illness like ME/CFS creates many challenges. Along with the multitude of symptoms, we also have to learn to adapt to the restrictions placed on our lives and to manage our limited energy levels. The term “pacing” crops up repeatedly […]

Trial By Error: An Ill-Informed Article In The Guardian

David Tuller

      By David Tuller, DrPH People who know little or nothing about the illness or cluster of illnesses variously called myalgic encephalomyelitis, chronic fatigue syndrome, CFS/ME, and ME/CFS can’t seem to stop writing stupid and ill-informed stories about it. And Professor Michael Sharpe seems to blame “Americans”–rather than his own disastrous research–for his […]

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