ME Symptoms

Overactive Immune System ‘May Trigger ME-Like Symptoms’

BBC News

  By Laurel Ives, BBC Health. An overactive immune system may help explain the cause of chronic fatigue syndrome, scientists from King’s College London have suggested. Many sufferers of CFS, or ME, say their condition began with a challenge to their immune system like an infection. The scientists studied 55 patients with Hepatitis C who were […]

Trial By Error: The View From Norway

David Tuller

    By David Tuller, DrPH. I spent the last week of November in Oslo. The Norwegian ME Association invited me to give a couple of talks and have some meetings with public health officials. The city was charming, even if dark and overcast at this time of year. Not surprisingly, the same tussle taking […]

9 Rounds Of Electroshock Therapy. 6 Years Lost. All Because Her Doctors Got It Horribly Wrong

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    By Michele Lent Hirsch in Cosmopolitan.   She’s lying on a gurney in a white room, a blanket covering her body, an IV pinched into her arm. A nurse is sticking electrodes to the side of her head, like stickers. Soon they’ll send electric currents into her brain, inducing a seizure. She’s aware […]

Death in Chronic Fatigue Syndrome (ME/CFS) – What Has It Told Us ? The Autopsy Files

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    By Cort Johnson in Health Rising.   It’s always hard to lose a loved one, but the deaths in ME/CFS seem particularly hard. They tend to be quite painful, they often take place in the midst of a non-supportive medical system, and they’re a complete mystery. With no seeming way out it’s no […]

Ruins: An ME Senior’s Perspective

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  By Eileen Rosenbloom in #MEAction. You might think aging with myalgic encephalomyelitis (ME) is a seamless dance where an illness catches up with a stage of life. As people age with their own set of ailments, you’d hope this latter stage would offer a welcome mat of normalcy. Our healthy peers would like us […]

Tragedy In Bjärred – Increased Knowledge About ME Is Needed

Sweden

  From The National Association for ME patients.   In January 2018 a tragedy occurred in Bjärred, a family found deceased in its villa. Today, the police reported that parents chose to end their own and daughters lives and that both girls had been diagnosed with ME. RME deeply deplores the tragic development, our thoughts go […]

Living In A World Apart

Christmas

  By Suzan L. Jackson in ProHealth.   Holiday season is upon us, and that fills me with dread because it means lots of visits with extended family who see us only rarely. Our invisible illnesses become even more invisible at these times. I have been able to improve my condition and my son’s greatly […]

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome In The Era Of The Human Microbiome: Persistent Pathogens Drive Chronic Symptoms By Interfering With Host Metabolism, Gene Expression, And Immunity

Scientist using a microscope

      By Amy Proal and Trevor Marshall in Frontiers in Pediatrics.   The illness ME/CFS has been repeatedly tied to infectious agents such as Epstein Barr Virus. Expanding research on the human microbiome now allows ME/CFS-associated pathogens to be studied as interacting members of human microbiome communities. Humans harbor these vast ecosystems of […]

Accurate Diagnosis Of Myalgic Encephalomyelitis And Chronic Fatigue Syndrome Based Upon Objective Test Methods For Characteristic Symptoms

Doctor

  By Frank NM Twisk in World Journal of Methodology. Abstract Although myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are considered to be synonymous, the definitional criteria for ME and CFS define two distinct, partially overlapping, clinical entities. ME, whether defined by the original criteria or by the recently proposed criteria, is not equivalent […]

Shining A Light On Chronic Fatigue Syndrome, A Little Understood Disease Among Doctors

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  By Jennie Spotila, in the Inquirer.   I recently went to a new doctor. He looked over my chart: “Chronic fatigue syndrome,” he read, and then he glanced up at me. “You don’t look tired,” he quipped. “There, I made it go away.” I’ve been sick for 24 years, and I get comments like […]

Could Poor Microcirculation Be Causing Chronic Fatigue Syndrome (ME/CFS) ?

johnson_cort

  By Cort Johnson in Health  Rising. Could the microvascular system – the small capillaries and the red blood cells that run through them – hold the key to energy problems in chronic fatigue syndrome (ME/CFS) and perhaps fibromyalgia? The idea that the blood delivery system – not some metabolic derangement per se – is […]

‘Invisible’ Disabilities Campaign Calls On Community To ‘Think Outside The Chair’

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  By Laura Collins and Lucy Robinson in ABCNews Australia.   Living in an Australian society that understands and accepts all forms of disability is no longer a pipedream for New South Wales woman Marni Walkerden. Ms Walkerden is the brains behind the Think Outside the Chair campaign, which is launching in the NSW central […]

Tips For Newbies With Fibromyalgia And/Or Chronic Fatigue Syndrome (ME/CFS)

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  By Cort Johnson in Health Rising.   Having any disease is scary, but having chronic fatigue syndrome (ME/CFS) and/or fibromyalgia (FM) often adds a hefty dose of confusion and bewilderment to that fear.  Not only are people with ME/CFS and FM typically exhausted and in pain, but problems with short-term memory and information processing […]

The UK ME/CFS Biobank: A Disease-Specific Biobank For Advancing Clinical Research Into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Research

  By Eliana M. Lacerda et al in Frontiers in Neurology.   Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling disease characterized by unexplained incapacitating fatigue, accompanied by variable multi-systemic symptoms. ME/CFS causes a significant personal and public health burden, and urgently requires the coordination of research efforts to investigate its etiology and pathophysiology and to develop […]

Trial By Error: Some Good News On Cochrane

David Tuller

  By David Tuller, DrPH. In what can only be characterized as a welcome surprise, Cochrane has rejected the revision of a 2014 review of exercise treatments for chronic fatigue syndrome, stating that the work does not meet the organization’s “quality standards.” Cochrane revealed the decision late Friday in a statement appended to the review, which itself […]

Do Graded Activity Therapies Cause Harm In Chronic Fatigue Syndrome ?

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  By Tom Kindlon in Journal of Health Psychology.   Abstract Reporting of harms was much better in the PACE (Pacing, graded Activity, and Cognitive behavioural therapy: a randomised Evaluation) trial than earlier chronic fatigue syndrome trials of graded exercise therapy and cognitive behavioural therapy. However, some issues remain. The trial’s poor results on objective measures […]

This Life With Gracie: What Is Chronic Fatigue Syndrome ?

Chronic

  By Gracie Bonds Staples, The Atlanta Journal-Constitution. Chronic fatigue syndrome. For more than two decades, those three words have consumed Liz Burlingame because, well, words mean something. They convey feelings and connote action. They can comfort or cause pain. They can be our best friend or our worst enemy, failing us completely. That’s how Burlingame […]

DWP Admits Failing To Keep Track Of Disability Discrimination Claims By Its Own Staff

DWP Caxton House

By John Pring in Disability News Service. The government department responsible for running the Disability Confident employment scheme has admitted failing to keep track of how many complaints of disability discrimination are made by its own staff. The Department for Work and Pensions (DWP) repeatedly brags about its much-criticised scheme, which aims to help employers recruit […]

“The Abnormal Cardiac Index And Stroke Volume Index Changes During A Normal Tilt Table Test In ME/CFS Patients Compared To Healthy Volunteers, Are Not Related To Deconditioning”

Research Study

  By C.(Linda) M.C. van Campen, Frans C. Visser* et al of the Department of Cardiology,Stichting Cardiozorg, Planetenweg, Netherlands.   Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a chronic, and often disabling disease. The disease is multi-systemic, and is characterized amongst others by chronic fatigue/exhaustion, exercise intolerance, memory and concentration disorders, headache, multi-joint and muscle pain, unrefreshing sleep and […]

‘I Was In Denial And Ashamed By My CFS’

ME4

  By Simon Del Favero in SBS Insight.   When Simon realised that treatment options in Australia for his chronic fatigue syndrome were limited he looked overseas for answers. I was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome  (ME/CFS) in early 2011 after a severe bout of glandular fever. In the years prior to my diagnosis I was studying […]

GET Paper Withdrawal Shocks CBT/GET Proponents – Emboldens ME/CFS Advocates

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  By Cort Johnson in Health Rising. Our mission is to promote evidence-informed health decision-making by producing high-quality, relevant, accessible systematic reviews and other synthesized research evidence. Our work is internationally recognized as the benchmark for high-quality information about the effectiveness of health care. Cochrane  The Cochrane Reviews are the gold standard – highly respected and […]

17 Things People With Chronic Illness Mean When They Say ‘I’m Tired’

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  By Erin Migdol in The Mighty.   Everyone has said “I’m tired” at one point or another. But those deceptively simple words can have so many meanings. Without knowing the extent of the exhaustion someone with chronic illness is feeling when they say they’re tired, people may think your “tiredness” can be cured by a nap or early night, like theirs, not […]

The Struggle To Gain Adequate Care While Living With Myalgic Encephalomyelitis (ME)

Disability

    By Corina Duyn in ME Advocates Ireland.   I have been ill with Myalgic Encephalomyelitis (ME) for twenty years. But it is only in the past year, and more so in the past six months that my most basic needs are not being met, at a time when my illness has become more severe again […]

Invisible Disabilities: Just Because You Can’t See it Doesn’t Mean it’s Not Real

Invisible Illness

  From Healthy Living Facts.   Have you ever heard diseases like fibromyalgia called an “invisible disability?” Essentially, invisible disabilities are conditions that can’t be seen but still have serious effects on your ability to live a normal life. The term makes a distinction between conditions like cerebral palsy, where the effects of the disability are […]

Trial By Error: Some Thoughts About NICE

David Tuller

  By David Tuller, DrPH. The UK’s National Institute for Health and Care Excellence (NICE), which develops clinical guidelines for a range of medical conditions, is currently selecting a committee to develop a new guidance for the illness it refers to as myalgic encephaloymyelitis/chronic fatigue syndrome (ME/CFS). The new guidance will replace one written in 2007, when […]

What You Would See If You Looked Under The Blanket Of ME/CFS

Lonely

  By Ali in The Mighty. Sometimes I feel like I am lost, not as in aimlessly wandering and off the track, but as in missing and can’t be found. But I am here, under blankets. Much of the time I can usually be found under an actual blanket on the couch or in my […]

This Is Personal: BHC’s Patient-First Perspective

Bateman Horne Center

  By Rachel Black in The Batema Horne Center.   Bateman Horne Center is guided by a board of directors that is intimately connected to ME/CFS and FM. Many have sons, daughters or are themselves managing an illness that has taken much of their life away. The Horne in Bateman Horne Most of you know that our […]

The Gut Microbiota At The Intersection Of Diet And Human Health

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  By Christopher L. Gentile, Tiffany L. Weir et al in Science.   Abstract Diet affects multiple facets of human health and is inextricably linked to chronic metabolic conditions such as obesity, type 2 diabetes, and cardiovascular disease. Dietary nutrients are essential not only for human health but also for the health and survival of the trillions […]

When I Can’t Hide My Chronic Fatigue Syndrome Anymore

ME

    By Kirsty Hird in The Mighty.   I remember in the late 1990s watching a film about a group of teenagers who dabble in witchcraft, with disastrous consequences. They use a form of magic called a “glamour,” which allows the witches to create an illusion, concealing the true form of something. In the film, glamours are used […]

Trial By Error: How To Avoid Ethical Review

David Tuller

  By David Tuller, DrPH I have written many posts about BMJ Open’s 2011 school absence study, which reported that school absence records could be useful in identifying children with chronic fatigue syndrome. However, for reasons not yet adequately explained, the investigators exempted the study from ethical review on the grounds that it qualified as “service […]

Woman In A Wheelchair Reveals Ordeal Of Simple Tasks Like Buying New Clothes

Wheelchair

  By Tanveer Mann in Metro.   Today is Purple Tuesday – and no, it’s not yet another day for crazy shoppers trying to bag a bargain. It’s actually pretty serious and is the first of its kind aimed at highlighting some of the challenges disabled people face while shopping. The national day was founded […]

Shining A Light On Chronic Fatigue Syndrome, A Little Understood Disease Among Doctors

Chronic

  By Jennie Spotila, For the Inquirer.   I recently went to a new doctor. He looked over my chart: “Chronic fatigue syndrome,” he read, and then he glanced up at me. “You don’t look tired,” he quipped. “There, I made it go away.” I’ve been sick for 24 years, and I get comments like […]

Dear Bug… When The Nights Are Long…

Jessica

    By Jessica Taylor-Bearman. My escapades with the change of drugs reached fever pitch three weeks ago, when I rang up the doctors with a blood pressure of 80/50….The dearest junior doctor had told me or more like made me promise that if my blood pressure went under 90/60, that I’d ring for an […]

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