Chronic Fatigue Syndrome

Chronic Fatigue Syndrome

Children With Chronic Fatigue Syndrome Often Wait More Than A Year For Diagnosis

Australia

  by Sasha Nimmo Researchers at the Murdoch Children’s Research Institute in Melbourne confirmed that paediatric chronic fatigue syndrome (Fukuda criteria) causes significant disability and little is known about how common the condition is or how it is currently managed in Australia. More than half of children have to wait a year or longer before […]

The Myth Of “It’s All In Your Head”

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  By Abby Pickus in DEPAUL Magazine.  In 1980, a high school English teacher from Wisconsin named Pat Fero went on a trip to England. Healthy and in her 30s, she noticed something was very wrong toward the end of the trip. “We were in this beautiful countryside, and we went to climb a hill […]

Why Is Music So Hard For People With ME/CFS ?

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  By Jody Smith in Pheonix Rising. Oh, how I love music! This magic can lift our spirits and calm our weary minds. Maybe it can even help us heal. Goodness knows, we who live with ME/CFS need these things. We’re probably not getting much of this elsewhere. So if music is so good for […]

How Nature And My Dog Changed My Outlook On Illness

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    By Jack Croxall in Allies Everywhere.   Growing up in rural England I was obsessed with the outdoors. Bug hunting, fossil collecting, and pond dipping were what I spent most of my time doing. But, during my time at university (living in the city of Nottingham and then in London), there wasn’t as […]

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, […]

Chronic Fatigue Syndrome, ME/CFS

Research

    From Cornell Research.     A million or more people in the United States suffer from myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), but remarkably little is known about the cause of the disease, and effective therapies are lacking. ME/CFS is characterized by debilitating fatigue that is not relieved by […]

Epstein-Barr Virus Induced Gene-2 Upregulation Identifies A Particular Subtype Of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Research Study

      By Jonathan R. Kelly in Frontiers in Pediatrics.   Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a chronic multisystem disease characterized by a variety of symptoms, and exhibits various features of an autoimmune-like disease. Subtypes are well recognized but to date are difficult to identify objectively. The disease may be triggered by infection […]

NIH Brings In New Faces And Looks To The Future In Accelerating ME/CFS Research Conference

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  By Cort Johnson in Health Rising.   Conferences are exciting because they’re virtually the only place one can go to learn about breaking research.  The NIH ME/CFS conference, with its bevy of new faces that’s taking place on the NIH campus itself on April 4th and 5th, certainly fulfills that need. Many of the heavy […]

When Doctors Brush You Off Because They Don’t Know How To Treat You

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  By Saidee Wynn in The Mighty.   In the TV show “Golden Girls,” a two-part episode titled “Sick and Tired” depicts the character of Dorothy, played by Bea Arthur, approaching a doctor while out at a restaurant. This doctor had earlier dismissed her symptoms as being all in her head and sent her on […]

A Huge Step Forward For ME In The US

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    There’s been a huge step forward for ME in the US. Kaiser Permanente is the largest managed care organisation in the U.S. It’s a forward-thinking organisation with a great reputation – which has got everything wrong about ME/CFS – until now. This article explains how Kaiser Permanente are out to change the way […]

ME News In Brief – March 2019

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  From Science For ME.   News – events this coming week ME/CFS International Research Symposium 12th – 15th March, Australia. Many well known ME researchers will be speaking. Emerge has announced that most of the program will be available to watch live and will be available afterwards. No pre-registration is required to watch online. […]

Trial By Error: Who Has The School Study Documents ?

David Tuller

      By David Tuller, DrPH. Update (later on March 4): Because Royal United Hospitals Bath suggested that I “redirect” my request for documents back to Bristol University, that’s what I did. Earlier today, I sent an e-mail to Bristol’s director of legal services. Here’s what I wrote: As you likely remember, I have […]

It’s Time To Pay Attention To “Chronic Fatigue Syndrome”

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  By Diane O’Leary in BMJ Blogs. Professional and public debate about myalgic encephalomyelitis/chronic fatigue syndrome(ME/CFS) has reached a new pitch.  A London Times article in August described the “acrimonious scientific row” that’s erupted in the UK now that the US Institute of Medicine, National Institutes of Health, and Centers for Disease Control insist that ME/CFS is not a psychosomatic […]

You Don’t Look Sick: ‘My Skin Condition Causes A Lot Of Pain But I Gave Up My Blue Badge Because Of Abuse’

Invisible Illness

  By Laura Abernethy in Metro.     Welcome to You Don’t Look Sick, our new weekly series about invisible illness and disabilities. There are 13.9 million disabled people in the UK, but for many of them, you would have no idea anything is wrong. Lots of people suffer from debilitating symptoms and daily struggles […]

Sleep Deprivation Can Mimic Chronic Fatigue

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    From Blue Mountain Gazette.   The reason for fatigue can be difficult to pin down, be it due to an underlying illness, a mental health issue, or a new baby in the house. But fatigue is more than just tiredness. Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) commonly affects the nervous, gut, […]

Why I Gave Up Trying To Be The ‘Good Patient’

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    By Alexis Redenbach in The Mighty. We’ve all seen the movies: the patient stoically braves the struggles of treatment and only gets angry one time, in a huge but righteous burst of frustration. The person in a traumatic accident is told they will never walk again but by sheer force of will, they somehow […]

Part II: ME/CFS, Sepsis And Glycocalyx

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  From Syndrome A.   To recap from the previous blog post “Part I: Blood Flow in Sepsis & ME/CFS”, ME/CFS looks like a lot like sepsis and sepsis is an inflammatory illness of blood vessels. The blood vessel problems in sepsis interfere with oxygen delivery to cells. The particular kind of blood flow problem that you find in […]

Abuse Prevention: How To Turn Off The Gaslighters

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    By Anna Moore in The Guardian.   Gaslight was the play that made its writer Patrick Hamilton a very rich man. It opened in London in 1938 to exceptional reviews. Noël Coward was a fan. King George VI took his wife to see it. In 1940, it became a British film, followed four years later by the […]

Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia & POTS? Pt I – The Brainstem Series

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    By Cort Johnson in Health Rising.   Jeff had a typical ME/CFS onset: he was a young, healthy and active individual before being felled by a viral infection and a high temperature. The infection left him with headaches, dizziness, muscle weakness and pain, sound and light sensitivity, and a general sense of being […]

Allodynia: A Rare, Distinct Type Of Pain In Fibromyalgia And ME/CFS

Chronic Pain

    By Adrienne Dellwo in Very Well Health.   Allodynia is a rare type of pain, generally on the skin, that’s caused by something that wouldn’t normally cause pain. This pain type is frequently associated with fibromyalgia, and some people with chronic fatigue syndrome have it as well. Other conditions associated with allodynia include neuropathy, postherpetic neuralgia (shingles), and migraines. Outside of these conditions, […]

Chronic Fatigue Syndrome: ‘It Was Like A Switch Had Been Flipped. I Couldn’t Stand Ip’

Irish Times

  By Louise Ní Chríodáin in The Irish Times.   Aspiring dancer Rosa Devine was 16 when illness took her legs from under her. Bedridden, by what she came to know as chronic fatigue syndrome, comic books and art would become first a solace, and then the trajectory to a new future. “It was easier to […]

People With Rare Diseases Get ‘Unequal Treatment’ From ‘Inflexible’ NHS Drug Regulator, Warns Report Calling For System Reform

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    By Vanessa Chalmers in The Daily Mail.   The NHS drug regulator has been branded ‘inflexible’ when it comes to approving medicines for rare diseases in a report calling for it to be reformed. The National Institute for Health and Care Excellence (NICE) gives guidance on how to improve health care, including advising on how […]

Trial By Error: The Cost Of MUS

David Tuller

    By David Tuller, DrPH In January, I wrote about the problematic online training course developed by the Royal College of General Practitioners and touted by Steve Brine MP as addressing the “misconceptions” about ME (or CFS/ME, as the online course calls the illness). The lead author of the course was Carolyn Chew-Graham, a professor of general […]

Enhancing Blood Volume In Chronic Fatigue Syndrome (ME/CFS) And Fibromyalgia

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    From Health Rising.   “You guys are about a litre short in blood volume, ok? If I’m sitting at five litres, you’re sitting at four. So, you’re really, really sensitive to blood volume changes. If you’re a little dry, you crash. ” Dr. Nancy Klimas.   The low blood volume finding in chronic […]

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

Pacing

      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 […]

Chronic Fatigue Syndrome: Research: Written question – 221619

Parliament

  Q Asked by Mrs Sharon Hodgson (Washington and Sunderland West) on 14 Feb 2019. Department for Business, Energy and Industrial Strategy Chronic Fatigue Syndrome: Research 221619 To ask the Secretary of State for Business, Energy and Industrial Strategy, how many grant applications have been made to the Medical Research Council for ME/CFS related research since 2010; how […]

21 People Describe What Sensory Overload Feels Like

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  By Melissa McGlensey in The Mighty.   Sensory overload happens when too much sensory stimulus is occurring at once — it can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting — or a hundred other things. It’s often associated with certain diagnoses like autism, sensory processing disorder, chronic fatigue syndrome, fibromyalgia, post-traumatic stress […]

The ‘Energy Bubble’ Analogy That Can Help Explain Pacing With A Chronic Illness

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    By Christina Baltais in The Mighty.   Pacing is about energy conservation, both physical and emotional. When you’re living with a chronic illness, it’s an essential skill for preventing flare-ups or “crashes.” This “energy bubble analogy” can be useful to help you visualize and understand the limits of your energy, and help you explain them […]

We Need To Stop Talking About Chronic Illness In This Particular Way

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  By Annie M. In The Mighty.   Have you ever noticed how people talk about illness, even mild illnesses like colds? We often say we are fighting them. We battle colds and fight the flu. We call our friends with scary medical conditions “warriors,” and we encourage them in their “battle” against their illness. It’s true […]

Your Resource Center

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From the Open Medicine Foundation.   Navigating the challenging world of ME/CFS and similar chronic complex diseases can be overwhelming, isolating and confusing. We would like to help you identify resources for education, support, and assistance. (Each image and underlined item below links to the resource it describes. Click on the link to directly access […]

Chronic Fatigue Syndrome: Medical Treatments: Written question – 218214

Parliament

  Question by Frank Field MP. Chronic Fatigue Syndrome: Medical Treatments. 218214 To ask the Secretary of State for Health and Social Care, what steps his Department is taking in response to the resolution of the House of 24 January 2019 on appropriate ME treatment. Answer by Steve Brine: The Government is investing over £1.7 […]

The Basics: A Guide To Learning, Sharing And Making A Difference In Chronic Fatigue Syndrome (ME/CFS)

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    By Cort Johnson in Health Rising.   Welcome to Health Rising. This page is designed to give you basic information on chronic fatigue syndrome (ME/CFS) and provide opportunities for you to learn about it, share your experiences, and participate in bringing about the end of this disease. It is focused on the U.S. […]

Facing Skepticism From Others That My Illness Isn’t ‘Real’

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  By Rebecca Handler in The Mighty.   Those of us with chronic illness are often forced to wage two wars at once. Not only must we cope with the immeasurable impact of our illness, but many of us also face the burden of skepticism from peers, the medical community, friends, and even family. If you’re anything […]

Dealing With Anger Now That I Have Chronic Fatigue Syndrome

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  By Jamison Hill in The Mighty.   I love to break things. Yeah, I know, who doesn’t? But I get such a satisfying feeling when I break something. Maybe not a bone, or a really expensive gadget, but breaking something cheap and discardable is satisfying to me. Very satisfying! In 2011, after I was sick for […]

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