ME Research And Researchers

A Watershed Moment Is Happening For Millions Of Missing People

Parliament

By Steve Topple in The Canary.   There will soon be a watershed moment for millions of chronically ill disabled people. Because what one MP described as a “medical scandal” will now face a full parliamentary debate. To read the rest of this story, click on the link below:   Link to ME story

Response To Vitamin B12 And Folic Acid in Myalgic Encephalomyelitis And Fibromyalgia

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    By Björn Regland, Sara Forsmark, et al in PLos ONE.   Abstract Background Patients with myalgic encephalomyelitis (ME, also called chronic fatigue syndrome) may respond most favorably to frequent vitamin B12 injections, in vital combination with oral folic acid. However, there is no established algorithm for individualized optimal dosages, and rate of improvement may […]

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

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  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

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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 […]

Neuroinflammation Review By #MEAction Research Fellows

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  By Jaime in #MEActionNet.   Though science may speed along a bit fast to ‘catch’ on audio, you can also listen to me read this article on #MEAction’s Soundcloud here. We are pleased and proud to announce that our two research fellows, Sydney A. Brumfield and Paula S. Lara Mejia, have written and released their first […]

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

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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 […]

The NIH Is Thwarting Research On A Poorly Understood Yet Serious Condition

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      By JENNIFER SPOTILA in statnews.com.   When I first developed myalgic encephalomyelitis in 1994, I had no idea that I would be just as sick 25 years later, or that there would still be limited scientific understanding of the disease and no effective treatments. Nor did I imagine that my career as a lawyer was over, and […]

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 […]

Trial By Error: My Norwegian Interview

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    By David Tuller, DrPH In addition to giving a couple of talks in Norway, I also answered some questions from Trude Schei, assistant Secretary General of the Norwegian ME Association. I doubt I said anything I haven’t stated many times before. However, members of the GET/CBT ideological brigades–in Norway and elsewhere–continue to maintain […]

Study Shows That Red Blood Cells Are Stiffer In People With ME

Blood Cells

  By Marilyn Simon-Gersuk in #ME Action. Researchers have published a paper that shows various measures of deformability in the red blood cells of people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) indicating that they are significantly stiffer in people with ME/CFS than those from healthy controls. The observations suggest that red blood cell transport through microcapillaries may […]

ME Patients Face UK Ban On Donating Blood

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An old story, but worth repeating for those who believe ME is all in our minds. By Michelle Roberts in BBC News. Patients with ME will no longer be able to donate blood in the UK under new safety guidelines. Officials say the ban, starting on 1 November, is designed to protect the health of […]

Red Blood Cell Deformability Is Diminished In Patients With Chronic Fatigue Syndrome

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    By Authors: Saha, K. Amit et al in IOS Press Library.   BACKGROUND: Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a poorly understood disease. Amongst others symptoms, the disease is associated with profound fatigue, cognitive dysfunction, sleep abnormalities, and other symptoms that are made worse by physical or mental exertion. While the etiology of the disease is […]

Trial By Error: “Talk Is Cheap,” Patients Tell NIH

David Tuller

    By David Tuller, DrPH. Earlier this month, NIH director Francis Collins and other agency officials held a meeting with five representatives from #MEAction. According to the group’s post about the meeting, the goal was “to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME.” Specifically, #MEAction urged […]

Ten Ways To Prove That Exercising Will Not Cure Chronic Fatigue Syndrome (ME/CFS)

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By Cort Johnson in Health Rising.   Your family, friends and even your doctor may, probably will at some point, prod you to get moving.  They think that if you can just get on your feet again and start exercising, you’ll be so much better. It’s irritating to hear and just reinforces how isolated you […]

Filling “The Landscape Of Unmet Needs” In ME/CFS and FM: The Bateman Horne Center Pt 1

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    By Cort Johnson in Health Rising.   This is the first of a couple of blogs that will celebrate visionaries within the ME/CFS/FM communities who took action to make their visions real. Dr. Bateman was doing yeoman’s work serving the ME/CFS/FM community in her medical practice in Salt Lake City, Utah.  She could […]

Humans of ME/CFS – Keith B

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From Solve ME/CFS Initiative. My ME/CFS story is 30 years long. It began in 1985 when I was stricken with a virus that never left and evolved in its effects. In the early days, I had to go back to bed after cleaning my teeth. Now, fatigue is not so much a problem but still […]

Deconditioning Denied: Could A Large ME/CFS Study Put An End To The Deconditioning Myth ?

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  By Cort Johnson in Health Rising. The Deconditioned ME/CFS Patient? A huge (n=345) 1998 UK study set the stage. The smaller, less muscular hearts and carotid arteries found in ME/CFS made it clear – at least to those researchers – that both physical and cardiovascular deconditioning was present in ME/CFS. They recommended a graded exercise program to […]

Trial By Error: Australian Draft Report Seeks Comments

David Tuller

    By David Tuller, DrPH in Trial By Error. In an eagerly awaited draft report, an Australian advisory committee on ME/CFS has called for the development of up-to-date domestic clinical guidelines and an increase in biomedical research into the pathophysiology of the illness. The draft report, which could have a major impact on health policy […]

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

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    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 […]

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 […]

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 […]

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 […]

Accurate Diagnosis Of Myalgic Encephalomyelitis And Chronic Fatigue Syndrome Based Upon Objective Test Methods For Characteristic Symptoms

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  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 […]

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 […]

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 […]

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