Myalgic Encephalomyelitis

Myalgic Encephalomyelitis

2018 Ramsay Class Receives Supplemental Funding To Support Innovative Projects From New Investigators

Funding

    From Solve ME/CFS Initiative.   Solve ME/CFS Initiative (SMCI) is pleased to announce that we have received funding to support additional Ramsay studies for the 2018 Ramsay Award Program Class that will be led by Dawei Li, PhD, an Assistant Professor at the University of Vermont, and Malav Trivedi, PhD, an Assistant Professor at Nova Southeastern University. Both Dr. Li […]

Trial By Error: The New Interferon “CFS” Study

David Tuller

    By David Tuller, DrPH I haven’t had time to cover the new and wildly over-hyped study about prolonged fatigue–and purportedly about “chronic fatigue syndrome”–that was published this week in the journal Psychoneuroendocrinology. Thanks no doubt to the involvement of the Science Media Centre, this mildly interesting piece of research has received widespread media attention. […]

Community Roundup – End-Of-Year, 2018

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From #MEAction.   As always, our community continues to amaze us with its tenacity, creativity, intellect, hard work and generosity. Enjoy a round-up of some of the community happenings these past few months where people with myalgic encephalomyelitis (ME) around the world continue to fight for recognition, treatment, care and dignity. Austrian broadcast station @ATV […]

When You’re Stuck In The Middle Of ‘Sick’ And ‘Well’

Chronic

  By Cherilyn Schutze in The Mighty.   Stuck in the middle of sick and well. That’s how I feel. Chronic illness is never easy, whether you are the person who’s sick, or the caretaker or family member of a person with a protracted illness. Before I became ill, I was very busy multi-tasking, care-taking, mothering, wife-ing, and working. […]

Trial By Error: How BMJ Enabled Bristol’s Ethics Exemptions

David Tuller

      4 DECEMBER 2018 By David Tuller, DrPH Earlier today, I sent the following e-mail to Dr Fiona Godlee, editorial director of BMJ. I cc’d Carol Monaghan MP, Darren Jones MP, and Nicky Morgan MP. I also cc’d Teresa Allen of the Health Research Authority. ********** Dear Dr. Godlee— As you know, I […]

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 […]

THE YORK ME COMMUNITY – YORK INTER COMPANY FANTASY FOOTBALL LEAGUE FOR THE YORK ME TGA SHIELD – UPDATE !

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  The York ME Community runs an Inter-Company Fantasy Football League sponsored by TGA Mobility.  This is to help raise awareness of the illness that affects around 250,000 people in the UK, and 800 in the York area alone.  Of those around York, 200 are likely to be severe, meaning house or bed bound. On […]

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

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      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 […]

Disabled Peer Calls For ‘Heavy Fines’ For Air Travel Access Failures

Air Travel

By John Pring in Disability News Service. A disabled crossbench peer has called on the government to start handing out “heavy fines” to the air travel industry when it fails to ensure that its services are accessible to disabled passengers. Baroness [Jane] Campbell asked the government on Monday what action it was taking to encourage all UK […]

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 […]

UN Day Of Disabled People: Government Could Face Court Over Universal Credit

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  By John Pring in Disability News Service.   The government could be forced into court to defend its failure to make the much-criticised universal credit benefit system accessible to disabled people. A parliamentary meeting held to mark the International Day of Persons with Disabilities (IDPD) on Monday – and to call for universal credit […]

Nationwide Joins Purple Light Up Movement To Recognise Contribution Of Disabled Employees

Disability

  By Sid Hayns-Worthington in the Swindon Advertiser.   The society’s Employee Disability Network organised sessions at the HQ to have open conversations about obsessive compulsive disorder, dementia, understanding anxiety and stress, and also included a mental health resilience workshop. The company held around 35 events across the country, coinciding with International Day of Persons with Disabilities […]

Motability Charity Boss To Go After Extra Bonus Revealed

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    From BBC News.   The boss of Motability Operations is to step down by 2020 following criticism over his pay and a scathing review from the government’s spending watchdog. The report from the National Audit Office revealed Mike Betts was in line for an extra £1.86m bonus on top of already “generous” pay. The […]

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) ?

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  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 […]

If Someone With Chronic Illness Says They’re Tired, Please Think Before Responding, ‘Me Too’

Chronic

    By Kaisha Holloway in The Mighty.   When being “tired” is more than just feeling tired… Don’t you just hate it when people try to get one up on you, by always striving to be worse off than yourself? Don’t you just hate it when people assume that tiredness is the same for […]

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 […]

Australia’s Health Minister Listening To People With ME

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    From ME Australia. by Sasha Nimmo Australia’s Health Minister, Greg Hunt, listened to people with Myalgic Encephalomyelitis (ME), families, scientists and organisations. Minister Hunt had a second meeting with ME Australia, along with Prof Paul Fisher, head of microbiology at La Trobe University and Dr Heidi Nicholl, Emerge Australia on Thursday. ME Australia […]

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 […]

Study Shows Red Blood Cells Less Deformable In ME Patients – Possible Biomarker

Blood Cells

Written by Ronald W. Davis, PhD in ME Action. This paper documents that red blood cells are less deformable in ME/CFS patients compared to healthy controls. It potentially could be a biomarker, and we are proceeding to design new devices that will make a clear distinction between patients and healthy controls. These devices will be […]

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

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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 […]

Pinetree’s Chronic Fatigue Syndrome / M.E. CBD Oil Success Story

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From Health Rising. (Thanks to Pinetree for providing her success story and personal recommendations. This blog was written by her and edited by me (Cort)) A success story is always a remarkable thing to hear. Pinetree still has chronic fatigue syndrome (ME/CFS), she’s not ‘normal’ or cured, but a single treatment has made a remarkable […]

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