myalgic encephalomyelitis

‘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 […]

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

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    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 […]

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 […]

Teen Housebound By ME Threatened Wiith Fine By School For Being ‘Truant’ – Now Benefits Assessor Says She’s Not In Enough Pain

Children

  By Claudia Tanner in iNews. Georgia Whyard claims teachers said she had ‘school phobia’ despite having an official diagnosis of myalgic encephalomyelitis In brief The once A* pupil suffers pain, extreme exhaustion, and migraines Mother says she was branded ‘school phobic’ due to poor attendance Department for Work and Pensions ruled she is not […]

18 Myths & Misconceptions Of Post-Exertional Malaise #PEM In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

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  By Dr Mark Guthridge in Thread Reader.   #PEM (aka PENE, “flare” or “crash”) is seriously debilitating symptom caused by exercise #SickNotWeak #SickNotTired #pwME #chronicillness #medtwitter #MedEd 1. #PEM is just tiredness No #pwME experience <pathological> fatigue after #exercise which can be long-lasting and includes debilitating fatigue, flu-like symptoms, cognitive impairment, #sleep disturbance   To read the rest of this story, click on the link below:   Link […]

Living With An Unsociable Illness

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  From the Not Just Tired Blog. As I’m writing this post, I’m sat in bed, having to take time out to rest, whilst we have a family member staying with us for the weekend. Enjoying listening from afar to the lively chatter, yet not a part of it. Would I not rather be downstairs, chatting […]

The Power Of Listening

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    From A Life Hidden. In September 2016, I contributed to a training course for junior doctors at my local hospital.  The following was used as part of a seminar entitled “Patients and doctors as partners in learning”.  I used the term ME/CFS for this piece, as this is how ME is known within the NHS. […]

New Research: Gene Variations In ME/CFS

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  By Rachel Black in Bateman Horne Center.   In our December 2018 education meeting, we were pleased to hear from Dr. Alan Light, a Professor of Anesthesiology, Neurobiology, and Anatomy at the University of Utah. He has published more than 120 peer-reviewed articles, and has spent the last 10 years of his career focusing […]

I Sometimes Feel Defeated By My Disability – And That’s Okay

Pippa

By Pippa in HUFFPOST.   Last month, Sport England and a number of partnering charities launched a new campaign aimed at people living with long-term health conditions. We Are Undefeatable, they called it – making a statement on behalf of the millions of people living with these illnesses in the UK. As a member of the […]

Changing The Narrative #4: The QMUL Judgment Explained And Some Observations On Feedback

Valerie Eliot-Smith

      By Valerie Eliot Smith.   The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.  “Institutional abuse is the maltreatment of a person…….from a system of power.” “Changing the narrative” was originally planned as a series of three posts which explored several different aspects relating to the […]

Trial By Error: What’s Up With Cochrane’s Exercise Review ?

David Tuller

  By David Tuller, DrPH. On June 17th, Cochrane announced that it had received a revision of a much-contested review of exercise therapy for treatment of chronic fatigue syndrome (as the organization has long called the illness or cluster of illnesses also referred to as myalgic encephalomyelitis, CFS/ME, and ME/CFS). In a posted statement, Cochrane noted that “the […]

4 Downsides (And Bright Sides) Of My Illness

Lost

      By Siobhain Simper in The Mighty.   As you may be aware, living with a debilitating chronic illness is no fun: the challenges thrown at you by a disease which dictates your every move can be overwhelming. But today, I’m choosing to celebrate the bright side. By putting a positive spin on […]

The Difficulty Of Living With A Fluctuating Condition

Pacing

    By Sally Doherty in The Mighty.   I don’t know about the rest of you, but there is such a difference between my good and bad days. Yes, I pace which is the number one advice for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I pace till I’m blue in the face (not […]

Novel Insights Into Overtraining Syndrome Suggest Chronic Fatigue Syndrome (ME/CFS) Connection

tired woman runner taking a rest after running hard on city road

  By Cort Johnson in Health Rising.   Were you an avid exerciser prior to becoming diagnosed with chronic fatigue syndrome (ME/CFS)? Are you sure you were diagnosed correctly? Symptomatically, overtraining syndrome (OTS) and ME/CFS appear almost identical. Symptoms like fatigue, pain, post-exertional malaise, sleep problems and cognitive issues pervade both “syndromes”. If it was […]

The Importance Of Accurate Diagnosis Of ME/CFS In Children And Adolescents: A Commentary

childcare

    By Keith James Geraghty and Charles Adeniji in Frontiers.   Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic illness that causes a range of debilitating symptoms. While most research has focused on adults, the illness also presents in children and adolescents. Many physicians find it difficult to diagnose the illness. In this commentary […]

Why The Way Healthcare Professionals Measure Patient Pain Might Soon Be Changing

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    By Richard Day in The Conversation.   The last time you went to see a doctor, it was probably because you were in pain – it’s by far the main reason people access the health service. And if you did go because of pain, your doctor probably asked you to rate it on […]

How My Life Has Changed Since I Developed ME/CFS

Lisa

    By Lisa Alloto in The Mighty.   When I was me… I always greeted you with a smile. I may have tried to say something funny to put a smile on your face and I was always excited about whatever plans we had for the day. When I was me… I worked out. […]

Cutting Out Toxic People From My Life After Becoming Chronically Ill

Friend

    By Shannon Marie in The Mighty.   I can count my friends on one hand, and I spend a fair amount of time alone. I prefer it this way. I’m often fatigued or otherwise symptomatic of Hashimoto’s with joint pain, brain fog, mood swings or back pain. So a day or two completely alone in […]

2018 ME/CFS Research

Research

    By Rochelle Joslyn.   2018 was a pivotal year for ME/CFS research, yielding over 200 publications specifically addressing various aspects of ME/CFS. Foundational work emerged from prominent biomedical scientists around the globe, leveraging powerful novel technologies and analysis strategies to advance our understanding of the disease presentation, pathophysiology, and effective treatment modalities. From sophisticated […]

Chronic Fatigue Syndrome: New Evidence Of Immune Role

Scientist using a microscope

By Tim Newman in Medical News Today. Researchers recently investigated the immune system’s role in chronic fatigue syndrome in unprecedented depth. The findings might help design future treatments. Chronic fatigue syndrome (CFS), or myalgic encephalomyelitis (ME), is a mysterious condition. The main symptom of CFS is extreme and often unrelenting fatigue. Others include muscle and joint pain, sleep issues, and flu-like […]

The York ME Community – York Inter Company Fantasy Football League For The York ME TGA Shield – Update

Football

  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.   […]

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