Myalgic Encephalomyelitis

Myalgic Encephalomyelitis

Don’t Be Blind To Invisible Illnesses – 5 Ways To Support Employees Suffering In Silence

Invisible Illness

    By Dr Ellie Cannon in fenews.co.uk.   According to Government statistics, there is an estimated 3.8 million people with a disability in employment. As this figure is pretty high, it’s likely that many business owners employ someone who has a disability, without even realising as 96% of illnesses are invisible.  In an ideal world, employees […]

Medical Council Agrees New Guidelines Are Needed

Me Australia

    by Sasha Nimmo in ME Australia.  National Health and Medical Research Council’s Chief Executive Officer, Prof Anne Kelso, today released her response the ME and CFS advisory committee’s report. Prof Kelso has decided that the NHMRC should develop clinical guidance on ME/CFS. This is a major decision as the current guidelines were condemned […]

Aids And Equipment For Managing Fatigue

Life of Pippa

        By Pippa, in Life of Pippa.   [AD] This piece is sponsored by CareCo Ltd and features affiliate links. More information can be found at the bottom of this post! Something that comes up a lot in conversation is how I negotiate living independently whilst dealing with long-term chronic fatigue. And whilst that’s […]

Beneath The Surface, Part 2

Iceberg - Hidden Danger And Global Warming Concept - 3d Illustration

    By Naomi Whittingham in A Life Hidden.   In Part 1, I highlighted some positive aspects of the BACME guidelines, as well as giving an overview of my concerns. Here, in Part 2, I look more closely at the guidelines’ focus on deconditioning and graded exercise therapy (GET), as well as their failure to address […]

Trial By Error: Bristol’s Report Due Soon; Slides From My Oxford Talk

David Tuller

  By David Tuller, DrPH A day of reckoning could be coming for Bristol University and Professor Esther Crawley, the ethically challenged pediatrician whose work has come under official scrutiny (that is, under scrutiny from people with greater authority than me) on multiple fronts. According to the Health Research Authority, the National Health Service unit […]

New Research Network Brings Fresh Energy To Fight Against ME

Scientist using a microscope

  By Ryan O’Byrne of University of Alberta.   The first research network in Canada to focus on chronic fatigue syndrome eager to attract new research into the poorly understood disease. Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is not a new disease, but it is one of the least understood. There […]

SEID Is Killing ME

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  From ME Advocacy.   Advocating in the United States for the disease myalgic encephalomyelitis (ME) has reached a new challenge that threatens the very core of the recognition for the disease. While some advocacy organizations have diverged and taken the alarming path of partnering with the US Health and Human Services (HHS) in adopting, […]

The Myhill Mitochondrial Test And ME/CFS Studies Take A Hit

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By Cort Johnson in Health Rising.   The ATP Profiles test developed by Dr John McLaren-Howard (and the Mitochondrial Energy Score developed from it) has been a big deal for the chronic fatigue syndrome (ME/CFS) community. The test formed the basis for studies dating back to 2009 by Dr. Myhill, Dr. McLaren and Dr. Booth which asserted […]

Advocating For ME-ICC In Washington, DC

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    From ME Advocacy.   It has been 50 years since the World Health Organization classified myalgic encephalomyelitis (ME) as a neurological disease in 1969. Thirty plus years of misinformation about the harsh reality ME patients face has led to a crisis of grossly inadequate patient care. For decades patients have dealt with doctors […]

M.E. Information

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    From ME Support.   What is M.E.? The most frequently asked questions form this resource, which doubles as a useful information sheet to download. Myalgic “my-AL-jik” means muscle pain. Encephalomyelitis “en-SEF-uh-lo-MY-uh-LY-tis” means inflammation of the brain and spinal cord. A Short History of M.E. An insight into the history of this debilitating condition and the efforts […]

How Accessible Is The Beauty World To Those With Disabilities ?

accessibility

    By Amelia Abraham in Dazed Digital. DISABILITY CAMPAIGNER SAM RENKE, BEAUTY YOUTUBER KAITLYN DOBROW, AND THE CHARITY SCOPE SHARE THEIR THOUGHTS ON HOW THE INDUSTRY CAN DO BETTER For Sam Renke, who has osteogenesis imperfecta, also known as brittle bones disease, make-up is not a mask but a way to express herself. “Fashion and beauty […]

Scandic Hotels Introduces Standard For Fragrance-Free Allergy-Friendly Rooms

Fragrance

From Fragrance Sensitivity Australia.   Scandic Hotels, which has hotels in Sweden, Finland, Denmark, Norway, Germany, Poland, is the first hotel chain in the world to introduce a standard for allergy-friendly rooms. This means that guests booking allergy-friendly rooms can expect rooms prepared according to strict cleaning procedures and fragrance-free, hypoallergenic toiletries approved by the Swedish […]

Fibromyalgia And Chronic Fatigue Syndrome: The Gap Widens

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  By Cort Johnson in Health Rising.   The similarities are striking: the symptoms, the shoddy research funding, the poor treatment from doctors, the gender imbalance and the stigma both still face. Both diseases still really exist on the fringes of medicine and medical research. Yet one disease is moving forward rapidly and the other […]

My Disabled Body Is Not A ‘Burden.’ Inaccessibility Is

Accessibility

      By Aryanna Falkner in Healthline. I discovered my love for literature and creative writing during my senior year of high school in Mr. C’s AP English class. It was the only class I could physically attend, and even then, I usually only made it once a week — sometimes less. I used […]

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 on […]

‘But You Don’t Look Sick’: Living With An Invisible Disability

Invisible Illness

    By Nicole Precel in The Sydney Morning Herald.   When Rebecca Young parks her car in a disabled parking spot she often feels the searing stares. Is she driving her grandparents’ car? Why does she have a disability sticker when she is aged in her 30s and appears to walk perfectly well? Ms […]

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

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  From #MEAction.   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 is […]

Legal Firm Hands Out Cameras To Help Disabled Passengers Prove Discrimination

wheelchair

  By John Pring in Disability News Service.   Disabled people who experience repeated discrimination on public transport are being offered a camera to record video evidence for possible legal cases. Legal firm Fry Law, which specialises in disability discrimination cases, is hoping some of the evidence produced can then be used to bring cases […]

Architect Anthony Clarke’s Designs For ME

Me Australia

  by Anthony Clarke in ME News Australia.    Anthony Clarke of BLOXAS, an architecture practice for empathic and experimental architecture, was contacted by a South Australian woman with ME to design a home for her. His research led him to a screening of ‘Unrest’ and a friendship with Anna Kerr, who also has ME. […]

My Story

Blog

    From Mummying and M.E.   I used to be healthy (ish!) Full of energy. I used to think nothing of working a 10+ hour day, 5 days a week, going to a 2-hour rehearsal twice a week after work, and most other nights going for a drink or 2 at the local. Weekends were spent […]

Why Friendships Can Be Difficult With A Chronic Illness

Friend

    By Jo Moss in The Mighty.   There is a saying that goes, “It’s amazing how chronic illness turns friends into strangers and strangers into friends.” Maintaining friendships can be difficult for those of us with chronic illness. It may be hard for friends to understand the challenges we face, and the limitations our ill-health places on […]

Rituximab For Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Fail

Rituximab

    From Questioning Answers.   B-cell depletion using several infusions of rituximab over 12 months was not associated with clinical improvement in patients with ME/CFS [Myalgic Encephalomyelitis/Chronic Fatigue Syndrome].” That was the conclusion reached in the paper by Øystein Fluge and colleagues [1]. Their findings based on the use of rituximab, “a drug that is often used to treat inflammatory diseases (for […]

The Never-Ending Challenge Of Dealing With Post-Exertional Malaise (PEM)

Tired

  From the Not Just Tired Blog.   After a good day, or a spell of feeling pretty ok, it’s always a kick in the teeth when Post-Exertional Malaise (PEM) catches up with you. As I’m sure those of you living with ME/CFS, will be all too familiar with. For those not familiar, PEM is […]

Molecules May Convert Acute Infection Into ME

Me Australia

      By Sasha Nimmo in ME Australia.  A paper published in Metabolic Brain Disease by Morris, Maes, Burk and Puri suggests Myalgic Encephalomyelitis develops because of genes responsible for immune responses. Their paper discusses how molecules may convert an acute infection into a state of escalating chronic systemic inflammation. Morris and Maes have written extensively […]

Disability Hate Crime: Number Of Reports Rising

Disability Parking

From BBC News. Shocking but not surprising is how one campaigner has described a rise in disability hate crimes. Research by learning disability charity United Response found there were more than 6,000 reported cases in 2018-19, a rise of just under 12% in a year. The police force area with the largest number was West […]

The Claim That The Cure For The Crippling Fatigue Of ME/CFS Was To Change Your Mind Always Seemed Bizarre. Now It Really Is On The Way Out…

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      By Jerome Burne in Health Insight UK.   In September 2016 I posted a blog here about a research bombshell that had just exploded at the heart of one of the most bitter disputes in medicine – how best to treat a condition known as ME/CFS that involves relentless fatigue. A team of […]

Social Services Can Threaten Families Of Children With Chronic Fatigue

Family

    By Natasha Wynarczyk in Vice.   Myalgic encephalomyelitis, or ME, is little understood by the general public. That lands some parents in the firing line.   Angus Rodwell was an energetic, playful child from Suffolk, UK. Then,at the age of eight, he fell ill with a series of viral infections. Five years on, the 14-year-old […]

Unsolicited Health Advice Is Intrusive & Invalidating – Please Stop

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    By Jo Moss in A Journey Through The Fog.   Everyone living with a chronic illness has had to deal with unsolicited advice about their health. Whether it’s from strangers on social media or from well-meaning friends and family, uninvited advice is a frustrating part of living with an incurable chronic illness. It’s […]

Chronic Inflammation Removes Motivation By Reducing Dopamine In The Brain

MS brain

    By Dr. Liji Thomas,  MD in News Medical Life Sciences.   Why do we feel listless when we are recovering from an illness? The answer is, apparently, that low-grade chronic inflammation interferes with the dopaminergic signaling system in the brain that motivates us to do things. This was reported in a new paper published in […]

Interview With Dr Nina Muirhead

Dr Nina Muirhead_0

    From ME Support In Glamorgan.   Dr Nina Muirhead is a dermatologic surgeon at the NHS who is married and has two children. Anyone hearing this information may think that everything is going well with her. In fact, she has been suffering from a disease called Myalgic Encephalomyelitis (ME), commonly known as Chronic […]

The Cure For Toxic Positivity

toxic-positivity-header

  By Rebecca Renner in Forge.   When my dad was diagnosed with colon cancer at age 52, I was flooded with emails, calls, and in-person pep talks from friends and acquaintances. Anyone who’d ever met me, it seemed, was eager to offer up a platitude. “Think positive,” they told me. “It will be okay. […]

David Tuller On Exposing The Bad Science Behind The Biopsychosocial Effort To Define ME/CFS

David Tuller

    By Cort Johnson in Health Rising.   “…many of these people spout nonsense and then freak out when confronted with facts or details about the research that they can’t explain away.” David Tuller David Tuller is a unique figure in the ME/CFS universe. A reporter and editor for the San Francisco Chronicle, Salon and […]

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