ME World Perspective

What “Phantom Nasal Congestion” May Tell Us About ME/CFS And Fibromyalgia

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    By Cort Johnson in Health Rising.   When you have a systemic disease, any part of your body can provide a clue – even your nose. Over 15 years from 1998 to 2012, James Baraniuk, a longtime ME/CFS and GWI researcher at Georgetown University, became the first and thus far the last person […]

Christchurch Chronic Fatigue Syndrome Sufferer Told It Was All In Her Head

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  By Oliver Lewis in stuff.co.nz.   An estimated 16,000 to 20,000 people in New Zealand have chronic fatigue syndrome. Despite this, the debilitating condition remains poorly understood. OLIVER LEWIS reports. Gillian Watson calls it the year she forgot. The Christchurch woman was struck down with flu in the latter half of 2015 and never really […]

Are You A Clumper Or Slider ? The ESR ME/CFS And Fibromyalgia Poll

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By Cort Johnson in Health Rising.   It’s the simplest of medical tests. The erythrocyte sedimentation rate (ESR or SED rate) test simply measures the rate at which the red blood cells in whole blood descend in a test tube over a period of one hour. This non-specific measure of inflammation works because, during an inflammatory process, […]

Meet The Researchers – Michael Van Elzakker (PhD) and Kenneth Kwong (PhD)

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From Solve ME/CFS Initiative.   Michael (Mike) Van Elzakker, PhD, a researcher at Massachusetts General Hospital and Harvard Medical School, has been an influential thought leader in how the field might leverage imaging techniques to assess neurological features of ME/CFS. Kenneth (Ken) Kwong, PhD and Suk-tak (Phoebe) Chan, PhD, experts in functional magnetic resonance imaging (fMRI), will co-lead the […]

Trial By Error: “Bristol, It Is Time To Withdraw Your Complaints To Berkeley”

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    By David Tuller, DrPH I have sent the following letter to Jane Bridgwater, Bristol University’s director of legal services and deputy university secretary. ********** Jane Bridgwater Director of Legal Services and Deputy University Secretary University of Bristol Bristol, UK Dear Ms Bridgwater: I have raised multiple concerns in recent years about research conducted […]

Breaking Through The Stigma Of Chronic Fatigue Syndrome

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  On Mornings with Kia Handley.   It’s more than just being tired. It’s got nothing to do with being lazy or making things up or being a hypochondriac. Life with Chronic Fatigue Syndrome is full of stigma and frustration. So what is it like? Nelly Thomas, comedian and author, is a mother to a […]

Beneath The Surface, Part 3

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    From A Life Hidden.   The third and final part of a series analysing the British Association of CFS/ME (BACME) guidelines on severe ME.  I have chosen to write extensively on this subject, as the guidelines encompass several themes that are important to me. The BACME guidelines support the biopsychosocial (BPS) model of ME, which […]

Dr Byron Hyde ME Expert

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By Wendy Boutilier in Global Advocates 4 Myalgic Encephalomyelitis.   Dr. Byron Marshall Hyde studied pre-medicine in the Faculty of Medicine, University of Toronto followed by a degree in Chemistry and Nutrition in 1961. His first medical employment was as an immunological research chemist at the Roscoe B. Jackson Laboratory, Bar Harbor, Maine – a leading […]

Chronic Fatigue Syndrome: Gradually Figuring Out What’s Wrong

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  By Anthony Komaroff, MD in Harvard Health Publishing.   In 1983, a health professional in her 30s walked into my office and said, “I’ve been healthy all of my life. A year ago, I came down with some kind of virus — sore throat, aching muscles, swollen lymph glands, fever. My fatigue was so bad […]

After Long-Awaited Recognition, Serious Research Begins On Chronic Fatigue Syndrome

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  By Vik Adhopia – CBC News.   A network of Canadian scientists is trying to make up for lost time in the search for a standard diagnostic test and treatment for a debilitating, poorly understood disease that had long been dismissed as a psychological illness. Myalgic encephalomyelitis ― commonly known as chronic fatigue syndrome (ME/CFS) ― is […]

Neuroendocrine Dysfunctions in Prolonged Critical Illness: Relevance for Chronic Fatigue Syndrome ME/CFS and Fibromyalgia Pt. I

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    By Dominic Stanculescu in Health Rising.    Summary Prolonged or chronic critical illness – a term applied to patients that survive severe injury or infection, but fail to start recovering after a few days – is characterized by low levels of peripheral hormones (including T3, IGF-1, cortisol and testosterone). This pattern is increasingly recognized as a neuroendocrine dysfunction […]

Doctor Lapp’s Amazing Chronic Fatigue Syndrome Disability Letter

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    From How To Get On.   Doctor Lapp is a well-respected and much-beloved doctor in North Carolina who specialized in ME and CFS who is excellent at documenting this condition. Sadly, Doctor Lapp is now retiring and no longer accepting new patients. Happily, one of his patients was kind enough to share her […]

Researchers discover potential therapeutic approach to treat ME / CFS

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    By Carley Rosengreen in Griffith News.   Researchers have discovered the pharmacological drug, Naltrexone, significantly restored the function of faulty receptors associated with myalgic encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).  Researchers from the National Centre for Neuroimmunology and Emerging Diseases (NCNED), Menzies Health Institute Queensland, Griffith University led the research, which has been published in Frontiers in Immunology.  […]

Rethinking The Standard Of Care For Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

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    By Fred Friedberg, Madison Sunnquist and Luis Nacu in Springer.   For over two decades, the standard of care for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been cognitive behavior therapy (CBT) and graded exercise therapy (GET). Both interventions had been recommended by the US Centers for Disease Control and the UK NICE guidelines.1 Behavioral intervention as the clinical standard […]

Brain Studies Show Chronic Fatigue Syndrome And Gulf War Illness Are Distinct Conditions

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    By Karen Teber in Georgetown University Medical Center News.   Gulf War Illness (GWI) and chronic fatigue syndrome (CFS) share symptoms of disabling fatigue, pain, systemic hyperalgesia (tenderness), negative emotion, sleep and cognitive dysfunction that are made worse after mild exertion (postexertional malaise). Now, neuroscientists at Georgetown University Medical Center have evidence, derived […]

ME And Me: Making Films About Disability To Raise Awareness

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      From Disability Horizons.   Disabled writer and actor Thom Jackson-Wood, who has ME, talks to Disability Horizons about his films, Awaken and The Black Box, both of which are about disability. Written after frustrations at disabled people being misrepresented on TV, he hopes the films will raise awareness of different disabilities, and […]

From Infectious Disease Specialist To ME/CFS Expert: Dr. Bela Chedda Talks

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    By Cort Johnson in Health Rising.   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 one of the younger […]

Can mHealth Tools, Smart Clothing Help In Chronic Fatigue Research ?

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    By Eric Wicklund in mHealth Intelligence.   mHealth researchers in Canada are launching a five-year project to gather information through wearables and smart clothing to help people living with chronic fatigue syndrome. The Canadian Institutes of Health Research today unveiled the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis – ICANCME – Research Network. The program will use […]

The Suffering Of One Of Us Is The Story Of All Of Us: Pt I – REELing

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    By Kyle McNease in Health Rising.    (Kyle’s story of going from abundant health to a very severe case of ME/CFS, and then, when all looked bleakest, back to relative health, almost defies description. The length of his narrative, the elegance and directness of his writing, even the difficulty it sometimes presents, makes it unique […]

Marcel Robert’s View Is A Darkened Room In A Rest Home: Life With Chronic Illness ME

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    By Natalie Akoorie in M.E. Awareness NZ.   Marcel Robert lives in a rest home. He is 31 years old. Natalie Akoorie finds out what it’s like to be unable to live life because of an illness and why funding for research is so important. In a darkened room at Oxford Court Lifecare in […]

‘I’ve Got Relatives With ME/CFS’ – Dr Richard Medlicott’s Reason Behind Fundraising Ride

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    By: Natalie Akoorie in New Zealand Herald.   Richard Medlicott is not your usual GP. The Wellington doctor, and former medical director of the New Zealand College of General Practitioners, is raising money for a chronic illness that many in the medical profession know little about. Medlicott has set up a Givealittle page for his […]

Inside The Isolation Caused By ME/CFS Hypersensitivity

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    By Jo Moss in A Journey Through The Fog.   I find hypersensitivity one of the hardest ME/CFS symptoms to cope with as it can be so isolating. Hypersensitivity comes in many forms: hypersensitivity to light, touch, noise, smells, vibrations, foods, medication, chemicals, heat, cold and irritants like pollen and dust. All of […]

Emerging Insights #1: McGregor’s Grand Conception Of ME/CFS

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By Cort Johnson in Health Rising.   This is the first in a series of blogs that report on the recent EMERGE conference in Australia. The different conference format – which allowed for long presentations – allowed the presenters to dig more deeply into their topics than usual. Longtime Australian metabolomics researcher Neil McGregor took […]

What Does ‘Listen To Your Body’ Mean When You Have M.E ?

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  From ME Action.   So I’ve been doing this fundraiser, where I try to get 1000 body weight reps done in half an hour every day to raise money for #meaction. It’s been a test for me in listening to my body, and knowing when to slow down, rest, or even skip a day. And it […]

The Exercise Intolerance In ME/CFS – Is it Unique ?

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By Cort Johnson in Health Rising. Just about everyone with chronic fatigue syndrome (ME/CFS) has the sense that the disease has an astonishing ability to fall through the cracks. It’s a major disease that affects around a million people in the U.S. yet gets very little funding. It has no home at the NIH; it […]

The Mystery And Life-Wrecking Result Of Chronic Fatigue Syndrome

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    By Dr Cathy Stephenson in Stuff.   It’s Friday and I feel tired. Its been a busy week of work and I’m looking ahead to a weekend of cooking, cheering on the kids at a variety of sports games and a bit of socialising…..as well as the usual mountain of washing, cleaning and gardening that I […]

One Day He Was ‘Gifted’, The Next He Couldn’t String Together A Sentence

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    By Carrol Baker in kidspot.   Once bright and energetic 12-year-old Ethan struggled to get out of bed in the morning. But, as his mum Shelley says, that was just the beginning. At first, doctors prescribed bed rest. They thought it was a virus and they said you can’t really do anything for a virus, he’ll just […]

Medical Council Agrees New Guidelines Are Needed

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    by Sasha Nimmo in ME Australia.  National Health and Medical Research Council’s Chief Executive Officer, Prof Anne Kelso, today released her response the ME and CFS advisory committee’s report. Prof Kelso has decided that the NHMRC should develop clinical guidance on ME/CFS. This is a major decision as the current guidelines were condemned […]

Trial By Error: Bristol’s Report Due Soon; Slides From My Oxford Talk

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  By David Tuller, DrPH A day of reckoning could be coming for Bristol University and Professor Esther Crawley, the ethically challenged pediatrician whose work has come under official scrutiny (that is, under scrutiny from people with greater authority than me) on multiple fronts. According to the Health Research Authority, the National Health Service unit […]

New Research Network Brings Fresh Energy To Fight Against ME

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  By Ryan O’Byrne of University of Alberta.   The first research network in Canada to focus on chronic fatigue syndrome eager to attract new research into the poorly understood disease. Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is not a new disease, but it is one of the least understood. There […]

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, […]

The Myhill Mitochondrial Test And ME/CFS Studies Take A Hit

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By Cort Johnson in Health Rising.   The ATP Profiles test developed by Dr John McLaren-Howard (and the Mitochondrial Energy Score developed from it) has been a big deal for the chronic fatigue syndrome (ME/CFS) community. The test formed the basis for studies dating back to 2009 by Dr. Myhill, Dr. McLaren and Dr. Booth which asserted […]

Advocating For ME-ICC In Washington, DC

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    From ME Advocacy.   It has been 50 years since the World Health Organization classified myalgic encephalomyelitis (ME) as a neurological disease in 1969. Thirty plus years of misinformation about the harsh reality ME patients face has led to a crisis of grossly inadequate patient care. For decades patients have dealt with doctors […]

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