ME Treatments And Therapies

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 […]

Bold Plans For Two Big Biomedical Research Projects

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      By Simon McGrath in ME/CFS Research Review.   A new research team is hoping to boost UK biomedical research with a proposal for a very large genetic study and a major expansion of the UK ME/CFS biobank. The new ME/CFS Biomedical Partnership is headed up Professor Chris Ponting, and Dr Luis Nacul […]

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

Research

    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 […]

Using A Heart Rate Monitor To Prevent Post-Exertional Malaise In ME/CFS

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    By Susan L. Jackson in ProHealth.   One of the identifying characteristics and key symptoms of ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) is an intolerance to even mild exertion, known as Post-Exertional Malaise or PEM. In simple terms, this means that when people with ME/CFS engage in activity – even just walking […]

‘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 […]

A Self-Help Guide To Managing Myalgic Encephalomyelitis

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    From ME Support.   Introduction I have had Myalgic Encephalomyelitis of varying degrees for the majority of my life, including periods of being housebound and bedridden. Conventional medicine offers us few options, and we’re faced with conflicting advice on living with M.E.; therefore, it’s difficult to know which way to turn. One thing […]

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 […]

How To Tell If Your Exhaustion Could Actually Be A Symptom Of Chronic Fatigue Syndrome

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      By Hattie Gladwell in the Metro. Many of us experience tiredness – but when are your symptoms actually a sign of Chronic Fatigue Syndrome? It’s normal to get tired from daily activities, or because you’re not getting enough sleep. Having a stressful day, working too many hours or having a strenuous workout […]

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 […]

7 Tips For Better Pacing

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      By Julie Holliday in Pro Health. With an energy-limiting chronic illness like ME/CFS, a key to being as well as possible is to make sure you don’t use more energy than you readily have available to you (sometimes called your “energy envelope”). When you push past your limits, your cells have to […]

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 […]

National Roll-Out Of Electronic Prescription Service

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      From the Yorkshire Times.   All prescriptions across England will be digitised to make staff and patients’ lives easier, Primary Care Minister Jo Churchill has announced today. The electronic prescription service (EPS) will be rolled out nationally next month, following rigorous testing involving 60 GP practices and hundreds of pharmacies. Almost 70% […]

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

Me Australia

    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 […]

Beneath The Surface, Part 2

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    By Naomi Whittingham in A Life Hidden.   In Part 1, I highlighted some positive aspects of the BACME guidelines, as well as giving an overview of my concerns. Here, in Part 2, I look more closely at the guidelines’ focus on deconditioning and graded exercise therapy (GET), as well as their failure to address […]

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 […]

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 […]

Fibromyalgia And Chronic Fatigue Syndrome: The Gap Widens

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  By Cort Johnson in Health Rising.   The similarities are striking: the symptoms, the shoddy research funding, the poor treatment from doctors, the gender imbalance and the stigma both still face. Both diseases still really exist on the fringes of medicine and medical research. Yet one disease is moving forward rapidly and the other […]

He pioneered technology that fueled the Human Genome Project. Now his greatest challenge is curing his own son

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  By Ryan Prior, CNN.   (CNN)Multiple times a day, every day, Ron Davis sits with his head bowed, waiting outside his son’s bedroom for a subtle signal that it’s all right to come in. He opens the door to the space where Whitney has spent most of the last decade. Whitney lies motionless on […]

Parents And Children Missing From Their Lives Due To M.E.

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  From #MEAction.   Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. Parents with ME are missing precious days and years with their children due to the disease, and parents of children with ME are fighting to provide care for their sick children in a world where there is […]

Rituximab For Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Fail

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    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 […]

The Never-Ending Challenge Of Dealing With Post-Exertional Malaise (PEM)

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  From the Not Just Tired Blog.   After a good day, or a spell of feeling pretty ok, it’s always a kick in the teeth when Post-Exertional Malaise (PEM) catches up with you. As I’m sure those of you living with ME/CFS, will be all too familiar with. For those not familiar, PEM is […]

Molecules May Convert Acute Infection Into ME

Me Australia

      By Sasha Nimmo in ME Australia.  A paper published in Metabolic Brain Disease by Morris, Maes, Burk and Puri suggests Myalgic Encephalomyelitis develops because of genes responsible for immune responses. Their paper discusses how molecules may convert an acute infection into a state of escalating chronic systemic inflammation. Morris and Maes have written extensively […]

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

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    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 […]

Chronic Inflammation Removes Motivation By Reducing Dopamine In The Brain

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    By Dr. Liji Thomas,  MD in News Medical Life Sciences.   Why do we feel listless when we are recovering from an illness? The answer is, apparently, that low-grade chronic inflammation interferes with the dopaminergic signaling system in the brain that motivates us to do things. This was reported in a new paper published in […]

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 […]

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