Chronic Fatigue Syndrome

Chronic Fatigue Syndrome

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

Blood Test

    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

Sensory

  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

frozen-bubble-1943224_1920

    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

chronic-illness

  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

unnamed

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)

Cort_Johnson

    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’

woman_depressed

  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

Jamison

  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 […]

The Emerge Media And Research Digest (017) 8th February 2019

Australia

    Friday 8th February 2019 Latest news and research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome   Welcome to the Seventeenth Emerge Australia Media and Research Digest!   To read the digest, click on the link below:     Link to ME Digest

A Winter’s Tale – A Former Mountain Climber Reflects On Post Exertional Malaise And ME/CFS/FM

_1270448

By Simon Parker in Health Rising.   Fifteen years ago I was diagnosed with Fibromyalgia and ME (aka Chronic Fatigue Syndrome), a debilitating condition that includes continual pain and delayed fatigue as its primary symptoms. I often find myself trying to explain to other people what the delayed fatigue is like by giving an example […]

Metabolomics Study Suggests Chronic Fatigue Syndrome May Be Oxidative Stress/Low Oxygen Disease

johnson_cort

    By Cort Johnson in Health Rising.   Disturbances in circulation and provision of oxygen to tissues could underlie many symptoms of ME/CFS. Metabolomics has quickly become one of the hottest research trends in chronic fatigue syndrome (ME/CFS).  The metabolomic work in ME/CFS started with the Australians, picked up speed when Ron Davis and […]

The HRA Report Does Not Exonerate The PACE Trial, It Merely Confirms That Its Research Ethics Approval Was In Order

Pace-Study-debunkedrev-330x330

  From Not The Science Bit.   Great news. The PACE Trial controversy has been resolved! Oh, wait…er, no it hasn’t. Rather, the spin cycle of eminence-based medicine continues. The UK’s Health Research Authority have released a report on their assessment of the beleaguered PACE Trial, and have concluded that they are happy with it. Cue the usual well-paid, eminent, professorial […]

What About M.E.? Living With A Little Known And Widely Misunderstood Neurological Disease

ME

    By Lori, in Rare Disease Day.   What About M.E.? Living with a Little Known and Widely Misunderstood Neurological Disease Myalgic Encephalomyelitis Chronic Fatigue Syndrome, or ME CFS for short, is the disabling disease that I’ve been diagnosed with and that has changed my life forever. First, some words about the disease itself. […]

Homeless: How AMMES Is Keeping People With ME In Their Homes

Lonely

By Erica Verrillo, who is President of the American ME and CFS Society (AMMES) in #MEAction. Years ago, Dr. Bell made the observation that many people currently living in cars most likely had chronic fatigue syndrome (CFS). (The acronym myalgic encephalomyelitis (ME/CFS) was not used at that time.) Under any circumstances, the threat of homelessness […]

Trial By Error: A Recap Of The School Absence Study

David Tuller

  By David Tuller, DrPH Last week I broke the news that Bristol University is conducting an independent investigation of a number of studies that were exempted from ethical review on the grounds that they qualified as “service evaluation.” Because the issues involved are confusing and complex, I thought it would be helpful to repost here part […]

Going Back in Time…

golden-spiral

    From Spoonseeker.com Blog.   When the ‘Guidelines for Commissioners of Services with Medically Unexplained Symptoms‘ document was first published a year or so ago, there were those in the Science for ME forum who were sceptical about whether the project was viable. Prof Jonathan Edwards commented: “I actually think this guidance will fall completely […]

New Research: Gene Variations In ME/CFS

research1

  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 on the symptoms […]

The Guilt Of Prioritizing Yourself When You’re Chronically Sick

Frustration Chronic Illness

    By Meridith O’Connor in The Mighty.   I’m in a constant state of risk, using my energy towards something with the potential to cost me other life events later. It’s a difficult balance, knowing when to push through and feel sick later, or prevent the latter by taking precautionary care of myself first. Everyone always […]

Huge ME/CFS Event Held In Boston

Conference

      By Rivka Solomon in ProHealth. Every now and then something happens in our global ME (Myalgic Encephalomyelitis) community that is both noteworthy and hopeful. Something that makes us believe things may actually change for the better. That’s what happened on January 15, 2019, in Boston, Massachusetts, a city known as a medical […]

What Causes Chronic Fatigue ? What We Know, Don’t Know And Suspect

Research Study

    By Mark Guthridge, Monash University, in The Conversation.    Around 200,000 people in Australia suffer from a debilitating illness often branded with the unfortunate name of chronic fatigue syndrome (CFS). I say “unfortunate” because this implies patients are simply tired, run-down, burnt-out or overly stressed. But myalgic encephalomyelitis, or ME/CFS as it is now more commonly called, […]

The Monster Disease Medical Schools Don’t Mention

Llewelyn King

    by Llewellyn King in Inside Sources.   For 10 long years, I’ve been writing and broadcasting about Chronic Fatigue Syndrome, now called Myalgic Encephalomyelitis (ME). Like all chronic diseases, it’s brutally unfair to the afflicted. But ME also can claim to have been unfairly treated by doctors and medical researchers, the pharmaceutical giants, and the […]

Changing The Narrative #2: Warring Factions, Divide & Rule And Death Threats

Valerie Eliot-Smith

    By Valerie Eliot Smith.   The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.  Introduction This is the second part of my series of posts on changing the narrative around the illness myalgic encephalomyelitis (ME). The first part of this series can be found at Changing the […]

The Best, Most, Biggest And Least Of 2018 In Chronic Fatigue Syndrome And Fibromyalgia

johnson_cort

  By Cort Johnson in Health Rising.   The Best, Most and Least of 2018 A look back at a most interesting year which has to start with Cortene… Treatment Nicest Surprise It wasn’t supposed to go like this. First, in a disease like ME/CFS, you’re supposed find a repurposed drug or two to treat […]

Changes In The Transcriptome Of Circulating Immune Cells Of A New Zealand Cohort With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Research

By Eiren Sweetman et al in Sage Journals.   Abstract. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a poorly understood disease affecting 0.2%–2% of the global population. To gain insight into the pathophysiology of ME/CFS in New Zealand, we examined the transcriptomes of peripheral blood mononuclear cells by RNA-seq analysis in a small well-characterized patient group […]

Neuroinflammation And Cytokines In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Critical Review Of Research Methods

research1

By Michael B. VanElzakker, Sydney A. Brumfield and Paula S. Lara Mejia in Frontiers in Neurology.   Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is the label given to a syndrome that can include long-term flu-like symptoms, profound fatigue, trouble concentrating, and autonomic problems, all of which worsen after exertion. It is unclear how many individuals with this diagnosis are […]

What It’s Like To Live With Chronic Fatigue And Depression

ME

    By Eleanor Segall in Metro Lifestyle.   Chronic fatigue syndrome, also known as ME (myalgic encephalopathy) is estimated to effect 250,000 people in the UK. It is a serious and debilitating illness that at times can render its sufferers unable to function effectively due to the level of fatigue. ME is more than just exhaustion. […]

A Brightening Future: The State Of ME/CFS Research

Research

  By Simon McGrath in ME/CFS Research Review.   OPINION Although there are no treatments for ME/CFS on the horizon, things are looking up thanks to recent findings and a substantial increase in the amount of high-quality research. The field still needs much more funding. Do you remember the buzz around rituximab? Oncologists Dr Fluge […]

Mitochondria Play An Unexpected Role In Killing Bacteria

2-mitochondria

By KATARINA ZIMMER, in The Scientist.   EDITOR’S CHOICE IN CELL & MOLECULAR BIOLOGY The paper B.H. Abuaita et al., “Mitochondria-derived vesicles deliver antimicrobial reactive oxygen species to control phagosome-localized Staphylococcus aureus,” Cell Host Microbe, 24:625–36, 2018. According to biology textbooks, a macrophage engulfs a bacterium, internalizes it in a toxin-filled vesicle called a phagosome, then shuttles the […]

Perceptions Of Chronic Fatigue Syndrome In The Emergency Department

Livingston HealthCare Orthopedic Department

  From Georgetown University Medical Center.   WASHINGTON (January 10, 2019) — Findings from a novel online questionnaire of people with chronic fatigue syndrome (CFS) who rated their perceptions of care in a hospital’s emergency department suggest the majority of these patients do not receive proper care, say researchers from Georgetown University Medical Center. The study, […]

Living My Life In The Grey Area Of Disability

disability

    By Victoria Venable in The Mighty.   When people talk about the “isms” in society, racism and sexism are usually the first that come to mind. Later in the list comes ageism. Often forgotten and misunderstood, is ableism. Ableism: Discrimination or prejudice against individuals with disabilities. In the last nine months of my […]

Changing The Narrative #1: Exploring A New Approach To Strategic Communications In The ME Community

Valerie Eliot-Smith

    By Valerie Eliot Smith in valarieeliotsmith.com.   The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.  IntroductionI strted writing this blog in 2012. For several years since then, I have kept starting drafts on a particular topic, only to then abandon them because the subject-matter is complex […]

Riddle Of The Quiet Killer

Australia

  From The Sydney Morning Herald. Alison Hunter used to say she had lemonade in her legs and “shimlers” in her face. Still in primary school when she first became ill, those were the words she chose to describe the bizarre and frightening sensations that afflicted her. Vocabulary was still an issue when Alison died. […]

11 Hidden Realities (And 4 Hidden Gifts) Of Myalgic Encephalomyelitis

Mighty

    By Lisa Alloto in The Mighty. You can read quite a bit on the internet about the symptoms of myalgic encephalomyelitis. But there’s so much more beyond the clinical terms and symptom lists. Here are just a few of the hidden realities, along with a few hidden tricks! 1. You will likely grieve, and grieve […]

The York ME Community © 2015
Powered by Live Score & Live Score App