Chronic Fatigue Syndrome

Chronic Fatigue Syndrome

‘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 […]

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 […]

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 […]

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 […]

The Cure For Toxic Positivity

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  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 […]

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. […]

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 […]

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

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    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 […]

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. […]

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 […]

Ten Ways To Prove That Chronic Fatigue Syndrome (ME/CFS) Is A Serious Illness

Chronic

      By Cort Johnson in Health Rising. Chronic fatigue syndrome is a terrible name. It’s such a terrible name that you have to give the people around you a little break. With that name, they’re almost doomed, at least at first, to think ME/CFS is a milquetoast kind of disease best suited to […]

I Believe You: Three Powerful Words For The Chronically Ill

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    By Laura Chamberlain in Laura’s Pen.   Sometimes, you feel alone in your suffering and misunderstood. Sometimes, all you need is someone to say they believe you… I believe you. Those are three very powerful words. When I put together my post on what you SHOULD say to your chronically ill friend, I received […]

Dietary Advice For Bedbound ME/CFS Patients: Protein

Protein

      By Dr Courtney Craig.   Dietary protein requirements for the average person are about 0.8g/per kg body weight/day per the U.S. and European standards. That equates to about 67-114g per day for men, and between 59-102g per day for women. Adequate dietary protein allows for: Repair of tissues and cellular proteins: a […]

16 Everyday Tasks, And What They Feel Like For A Person With Chronic Fatigue

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    By Paige Wyant in The Mighty.   One of the most common (and frustrating) symptoms those with chronic illness face is chronic fatigue: an overwhelming sense of exhaustion that can be debilitating, and is much different than “just being tired.” (It’s also different than chronic fatigue syndrome/myalgic encephalomyelitis, a separate illness with its own set of symptoms.) […]

How Social Media Helps Shield Me From The Social Isolation Of Being Sick

Social Media

By Amber Blackburn in The Mighty.   When it comes to social media, we often hear about the negative aspects of each platform –like the fact that social media is full of highlight reels rather than what’s actually real. We only get to see what influencers choose to show us, which is usually only the […]

Thousands Of Studies Begin To Paint New Picture Of Chronic Fatigue

Fatigue

  By HEATHER GOLDSTONE & ELSA PARTAN in Cape and Islands.    Chronic fatigue syndrome was first described in the early 1980s, and it affects an estimated two and a half million Americans. For many years, doctors’ tests couldn’t find an explanation for patients’ symptoms, so they were dismissed as “nothing wrong.” But a growing body of research reveals […]

Are Chronic Illness And Trauma Related ? Here’s What You Need To Know

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      By Renee Fabian in The Mighty.   If you’ve been diagnosed with a chronic illness and experienced trauma, you may have some uneasy feelings about the connection between the two. After all, some doctors who don’t really understand tricky conditions like fibromyalgia or myalgic encephalomyelitis (ME/CFS), for example, might be quick to tell you your symptoms are […]

A Blue Badge And Invisible ME

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Gone from being life and soul Health gone down a huge black hole Rarely getting out too far Too much pain is the bar A blue badge now has rescued me When strength allows, it sets me free It gets me to a needed door Which was out of my aching reach before Many are […]

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 […]

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 […]

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 […]

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 […]

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