ME Research And Researchers

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 […]

Trial By Error: Fiona Godlee Doubles Down On Lightning Process Study

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      By David Tuller, DrPH. Earlier this week, Dr Fiona Godlee, editorial director of BMJ, e-mailed me in response to concerns expressed about the study of the Lightning Process published in Archives of Disease in Childhood, one of the journals under her purview. Those concerns were expressed in an open letter to her […]

UK Charity Pledges £500,000 For Research Into ME In Norwich Research Park

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    From The Quadram Institute.   UK Charity Invest in ME Research is pledging £500,000 for continued research into the disease myalgic encephalomyelitis (ME or ME/CFS) in Norwich Research Park, UK (NRP). This major investment builds on the foundations already made for a UK/European Centre of Excellence for ME research hub in Norwich Research Park. The […]

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, […]

Solid Ground At Last ? Cytokines Make Good In Major ME/CFS Review

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  By Cort Johnson in Simmaron Research.   The immune system in chronic fatigue syndrome (ME/CFS) has been kind of like a mirage in the desert. Given the way the disease starts and its symptom presentation – so close to the “sickness behavior” produced during an infection – it seems that the immune system must […]

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 […]

Link Between Inflammation And Mental Sluggishness Shown In New Study

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From Science Daily.   Scientists at the University of Birmingham in collaboration with the University of Amsterdam have uncovered a possible explanation for the mental sluggishness that often accompanies illness. An estimated 12M UK citizens have a chronic medical condition, and many of them report severe mental fatigue that they characterize as ‘sluggishness’ or ‘brain […]

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

David Tuller

    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 […]

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 […]

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 ?

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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 […]

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 […]

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

Iceberg - Hidden Danger And Global Warming Concept - 3d Illustration

    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

David Tuller

  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

Ron Davis

  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 […]

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 […]

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 […]

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