ME Research And Researchers

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

Scientist using a microscope

  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 […]

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 […]

David Tuller On Exposing The Bad Science Behind The Biopsychosocial Effort To Define ME/CFS

David Tuller

    By Cort Johnson in Health Rising.   “…many of these people spout nonsense and then freak out when confronted with facts or details about the research that they can’t explain away.” David Tuller David Tuller is a unique figure in the ME/CFS universe. A reporter and editor for the San Francisco Chronicle, Salon and […]

18 Myths & Misconceptions Of Post-Exertional Malaise #PEM In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

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  By Dr Mark Guthridge in Thread Reader.   #PEM (aka PENE, “flare” or “crash”) is seriously debilitating symptom caused by exercise #SickNotWeak #SickNotTired #pwME #chronicillness #medtwitter #MedEd 1. #PEM is just tiredness No #pwME experience <pathological> fatigue after #exercise which can be long-lasting and includes debilitating fatigue, flu-like symptoms, cognitive impairment, #sleep disturbance   To read the rest of this story, click on the link below:   Link […]

New Research: Gene Variations In ME/CFS

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  By Rachel Black in Bateman Horne Center.   In our December 2018 education meeting, we were pleased to hear from Dr. Alan Light, a Professor of Anesthesiology, Neurobiology, and Anatomy at the University of Utah. He has published more than 120 peer-reviewed articles, and has spent the last 10 years of his career focusing […]

Changing The Narrative #4: The QMUL Judgment Explained And Some Observations On Feedback

Valerie Eliot-Smith

      By Valerie Eliot Smith.   The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.  “Institutional abuse is the maltreatment of a person…….from a system of power.” “Changing the narrative” was originally planned as a series of three posts which explored several different aspects relating to the […]

Trial By Error: What’s Up With Cochrane’s Exercise Review ?

David Tuller

  By David Tuller, DrPH. On June 17th, Cochrane announced that it had received a revision of a much-contested review of exercise therapy for treatment of chronic fatigue syndrome (as the organization has long called the illness or cluster of illnesses also referred to as myalgic encephalomyelitis, CFS/ME, and ME/CFS). In a posted statement, Cochrane noted that “the […]

Novel Insights Into Overtraining Syndrome Suggest Chronic Fatigue Syndrome (ME/CFS) Connection

tired woman runner taking a rest after running hard on city road

  By Cort Johnson in Health Rising.   Were you an avid exerciser prior to becoming diagnosed with chronic fatigue syndrome (ME/CFS)? Are you sure you were diagnosed correctly? Symptomatically, overtraining syndrome (OTS) and ME/CFS appear almost identical. Symptoms like fatigue, pain, post-exertional malaise, sleep problems and cognitive issues pervade both “syndromes”. If it was […]

The Importance Of Accurate Diagnosis Of ME/CFS In Children And Adolescents: A Commentary

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    By Keith James Geraghty and Charles Adeniji in Frontiers.   Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic illness that causes a range of debilitating symptoms. While most research has focused on adults, the illness also presents in children and adolescents. Many physicians find it difficult to diagnose the illness. In this commentary […]

2018 ME/CFS Research

Research

    By Rochelle Joslyn.   2018 was a pivotal year for ME/CFS research, yielding over 200 publications specifically addressing various aspects of ME/CFS. Foundational work emerged from prominent biomedical scientists around the globe, leveraging powerful novel technologies and analysis strategies to advance our understanding of the disease presentation, pathophysiology, and effective treatment modalities. From sophisticated […]

Mitochondria Play An Unexpected Role In Killing Bacteria

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  By Katarina Zimmer in The Scientist.   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 cellular remains to a lysosome for degradation. […]

Chronic Fatigue Syndrome: New Evidence Of Immune Role

Scientist using a microscope

By Tim Newman in Medical News Today. Researchers recently investigated the immune system’s role in chronic fatigue syndrome in unprecedented depth. The findings might help design future treatments. Chronic fatigue syndrome (CFS), or myalgic encephalomyelitis (ME), is a mysterious condition. The main symptom of CFS is extreme and often unrelenting fatigue. Others include muscle and joint pain, sleep issues, and flu-like […]

The ‘All In The Mind’ Myth Of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

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  From Nursing In Practice. Health professionals should be made aware that ME/CFS is not a psychological illness and in order to improve patient care, nurses need to better understand this illness and its impact on patients. Nurses often witness close-up the impact of acute and chronic illness on patients. Myalgic encephalomyelitis (ME)/chronic fatigue syndrome […]

Fibromyalgia And Chronic Fatigue Syndrome: The Gap Widens

johnson_cort

    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 […]

My Letter To The BMJ Regarding Their Lax Editorial Approach To Bogus Therapy Paper

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    By Brian Hughes in The Science Bit.   Here it is. I think it is pretty self-explanatory (nonetheless, I have added some additional context below the fold): For context, my email is part of a now lengthy correspondence following an Open Letter to the BMJ arising from the correction of the ‘Lightning Process’ paper. I […]

Did A Pivotal Moment For ME/CFS Just Happen ?

NIH

      By Cort Johnson in Health Rising.   The National Institutes of Health (NIH), with its pitiful funding, has been a thorn in the ME/CFS community’s side for decades. For decades advocates have thrown everything they could – heartbreaking stories, demonstrations, insults – at the NIH in vain.  Even the much acclaimed 2015 […]

Dietary Advice For Bedbound ME/CFS Patients: Protein

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      By Dr Courtney Craig.   Dietary protein requirements for the average person are about 0.8g/per kg body weight/day per the U.S. and European standards. That equates to about 67-114g per day for men, and between 59-102g per day for women. Adequate dietary protein allows for: Repair of tissues and cellular proteins: a […]

Thousands Of Studies Begin To Paint New Picture Of Chronic Fatigue

Fatigue

  By HEATHER GOLDSTONE & ELSA PARTAN in Cape and Islands.    Chronic fatigue syndrome was first described in the early 1980s, and it affects an estimated two and a half million Americans. For many years, doctors’ tests couldn’t find an explanation for patients’ symptoms, so they were dismissed as “nothing wrong.” But a growing body of research reveals […]

Vitamin B12 Deficiency: The Six Main Signs You’re Lacking B12 And Could Be Deficient

Vitamin

      By JESSICA KNIBBS in The Express.   Vitamin B12 is the water-soluble vitamin that plays an essential role in the production of red blood cells. Lacking in the vitamin could cause a number of signs in the body. What are the six main symptoms that could mean you are vitamin B12 deficient?   Vitamin […]

A Town For People With Chronic-Fatigue Syndrome

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      By Mike Mariani in The New Yorker. September 3, 2019   Patients moved from all over the country to Incline Village, Nevada, for an experimental drug. Then the drug disappeared.   In December of 2012, I came down with what at first looked like a bad case of mononucleosis. I felt tired and had […]

Invest In ME Research Newsletter – August 2019

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    Invest in ME Research is an independent UK charity campaigning for and facilitating biomedical research into myalgic encephalomyelitis (ME). More details of the charity are here.   To read the Newsletter, click on the link below:   Link to Invest in ME Research Newsletter

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

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  By Cort Johnson in Health Rising.   Dr. Chheda’s Road to ME/CFS 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 […]

Myalgic Dncephalomyelitis (Or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis And Management

NICE

      Call for evidence   What we need We need evidence from the areas listed below for the guideline we are developing on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: 1. Studies that evaluate: Management strategies that are adopted while someone is being assessed for a diagnosis of ME/CFS. Methods of monitoring and/or reviewing […]

Cortene To Move Forward On New Drug For Chronic Fatigue Syndrome (ME/CFS)

Cortene

  By Cort Johnson in Health Rising.   In February of last year, Health Rising announced an unusual event was going to take place: a small drug company named Cortene was going to trial a new drug for chronic fatigue syndrome (ME/CFS). Cortene’s trial was unique in a number of ways. For one, it involved ME/CFS […]

ME/CFS Seahorse Energy Production Study Shows Surprises

Research

    By Cort Johnson in Simmaron Research.   Dr. Maureen Hanson leads one of the three NIH funded ME/CFS research centers, but her ME/CFS research doesn’t stop there.  Using samples from Dr. Daniel Peterson provided by the Simmaron Research Foundation, she’s also been assessing the metabolism of one of the most important cells in […]

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