ME World Perspective

Coronavirus V: Lipkin, Bateman And Klimas Talk Plus Treatment Updates

USA

  By Cort Johnson in Health Rising.   My, how things change. Less than a month ago, only 70 coronavirus cases had been reported in the country. Our president had just recently announced that the virus was under control. The sun was shining brightly. How naïve we all were. Just a month later, the U.S. leads the […]

Ending The Somatization Myth In ME/CFS (Or “Who’s The Deluded One Now” ?)

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By Cort Johnson in Health Rising.   Ronald Reagan said to Gorbachev, “Take down that wall!” and it did ultimately fall.  The ME/CFS version of that might be, “Get rid of those stubborn psychiatric ideas!” It’s a cultural problem.  The authors pointed out that anytime a physician sees a patient with unexplained fatigue, their default […]

New Pathways: A Step Towards Fine-Tuning Treatments For ME/CFS ?

Research

    By Cort Johnson in Simmaron Research.   Most chronic fatigue syndrome (ME/CFS) studies focus on females, but for once we have a study contrasting females and males. It makes sense that this group – hailing from Dr. Klimas’s Institute for Neuroimmune Studies, the University of Miami, the Veterans Center in Miami, the University […]

Eight Reasons People With Chronic Fatigue Syndrome (ME/CFS) And/Or Fibromyalgia Should Take Care

Coronavirus Generic 1

  By Cort Johnson in Health Rising.   Please note, if it’s not obvious, that I’m not a doctor – I’m a patient. Take these musings as you will. We don’t know if people with ME/CFS or FM are more at risk of: a) getting COVID-19; or b) coming down with a severe case of […]

Do You Ever Feel Like Giving Up ?

Lost

    By Jo Moss in A Journey Through The Fog.   Do you ever feel like giving up? Do you ever feel like you don’t have the strength to keep going? Do you ever feel like screaming; “I didn’t sign up for this”? Do you ever feel like the world is against you? Do […]

Protecting Yourself From Coronavirus Is Proving Harder For Disabled People Like Me

Disability

  By Chloe Tear in Huffpost.   It feels like every headline you read now is about coronavirus. With the virus causing concern and costing lives worldwide, it isn’t surprising. But it’s important that we talk about what that concern looks like if you’re disabled. We already know those with pre-existing conditions, like me, are more […]

ME Awareness – Lightning Up Clifford’s Tower In Blue

Clifford's Tower 10 May

  Just to let you know that City of York Council has agreed to light up Clifford’s Tower in York in blue over the period 11 to 17 May to help raise awareness of Myalgic Encephalomyelitis (ME).   This is part of a worldwide campaign where buildings in towns and cities across the globe will […]

To Sleep At Last: A Good-bye To Darden Burns

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  By Cort Johnson in Health Rising.   “It comes down to the simple fact that I do not have enough energy to sustain my recovery. I am not sure that everyone in the CFS is like me, maybe I’m an outlier or just have a unique presentation of the condition. In any case I […]

Cell-Based Blood Biomarkers For Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome

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  By Daniel Missailidis, Oana Sanislav, Claire Y Allan, Sarah J Annesley, Paul R Fisher in Int. J. Mol. Sci. 2020, 21(3), 1142; [doi.org/10.3390/ijms21031142].   Research abstract: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a devastating illness whose biomedical basis is now beginning to be elucidated. We reported previously that, after recovery from frozen storage, lymphocytes (peripheral blood monocytic cells, PBMCs) from […]

Has The “Reptilian Brain” Gone Haywire In ME/CFS ? Back To The Brainstem We Go.

Brain anatomy  - cross section

By Cort Johnson in Health Rising.   The most primitive part of the brain, the brainstem – a  part of “the reptilian brain” – doesn’t get much respect in medical research. VanElzakker pointed out that most brain scan studies focus on the upper, more highly developed parts of the brain.  Because brain imaging techniques can’t […]

My Story – Living With Severe M.E.

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  By Jo Moss in A Journey Through The Fog. Foreword: Myalgic Encephalomyelitis (M.E.) is an incredibly isolating and debilitating condition but I don’t want your sympathy, that’s not why I’m writing this piece. All we (the M.E. community) ask is for understanding and education. We want to be taken seriously by medical professionals and […]

A Doctor’s Perspective: Is ME/CFS Really Lyme Disease ?

Research

  By Dr David Bell in ProHealth.   Editor’s Note: David S. Bell, MD is a well-known doctor in the field of ME/CFS treatment and research. Though now retired, Bell was among the first physicians who cared for the group of ME/CFS patients that were part of the original cluster of outbreaks in the mid-1980s. […]

Chronic Fatigue Syndrome: Living With An Invisible Illness

BBC News

  From BBCNews.   Lorna Bryson, 25, suffers from Myalgic Encephalomyelitis (ME) also known as chronic fatigue syndrome. The illness means she has a low immune system, gets headaches, sore muscles and joints, and needs at least 12 hours sleep every night. Doctors didn’t believe there was anything wrong with Lorna growing up as she […]

WHO Retires “Benign” From “Benign Myalgic Encephalomyelitis” For Final ICD-10 Release

World Health Organisation

  BY ADMINDXRW in DX Revision Watch.   In my report for the December edition of the ME Global Chronicle, I set out how the G93.3 terms: Postviral fatigue syndrome Benign myalgic encephalomyelitis Chronic fatigue syndrome are classified in the World Health Organization’s international version of ICD-10 and how these terms have been classified for ICD-11. I have […]

Trial By Error: The Danish ME Association’s Open Letter

David Tuller

  By David Tuller in Trial By Error.   The Danish ME Association has sent and posted the following open letter to “Danish health politicians,” with a very impressive list of international signatories. It seemed important to give this letter wide circulation. (Note that footnotes 4 and 5 are linked to the names of two […]

Myalgic Encephalomyelitis (ME) In The Young. Time To Repent

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  By Ola Didrik Saugstad in Wiley Online Library.   Myalgic encephalomyelitis (ME)/ Chronic fatigue syndrome (CFS) is a complex disease with symptoms from multiple organ systems. The severity of these symptoms ranges from mild to severe with the most severely affected confined to a dark room to achieve sensory deprivation. Two incidence peaks have been […]

“Left Out”: An ME/CFS Movie Of Commitment, Hope And Despair

Fluge and Mella

  By Cort Johnson in Health Rising.   It was a project birthed in hope. Pal Schaathun, a Norwegian filmmaker would document what he hoped might be the end of chronic fatigue syndrome (ME/CFS).  That, unfortunately, turned out not to be but Schaathun ended up documenting – in strikingly beautiful fashion – the next best […]

Myalgic Encephalomyelitis (ME) In The Young. Time To Repent

mecfs-tagcloud

 By Ola Didrik Saugstad in Wiley Online Library. Myalgic encephalomyelitis (ME)/ Chronic fatigue syndrome (CFS) is a complex disease with symptoms from multiple organ systems. The severity of these symptoms ranges from mild to severe with the most severely affected confined to a dark room to achieve sensory deprivation. Two incidence peaks have been described between […]

Meet The Researchers Behind A New Trial Into ME

Research

    The Quadram Institute on the Norwich Research Park is holding a public meeting to talk about their ongoing research into myalgic encephalomyelitis (ME or ME/CFS). The event will also be a chance to give your opinions about the planned future clinical trial into a new form of treatment that targets gut microbes for […]

“The Tompkins Effect” at Harvard University: More Than Just An ME/CFS Research Center

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  By Cort Johnson in Health Rising.   The Ron Tompkins Effect Ron Tompkins had recently come back from a meeting with over a dozen MD’s and specialists from Mass General Hospital who’d evinced a strong interest in ME/CFS. Dr. Bateman has said it’s easy to get researchers, at least, interested in this disease but […]

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Initiative

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    From Stanford Medicine   Welcome The ME/CFS Initiative conducts extensive clinical research in an effort to improve diagnosis and treatment of this debilitating illness. Stanford Medicine has had great success in engaging and collaborating with nearly 50 researchers across Stanford University and beyond. Together, they have discovered various potential biomarkers that have confirmed […]

#MEAction Scotland’s Petition: Progress Continues

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  From Meaction Scotland.   On Thursday 19th December, 2019 the Scottish Parliament’s Public Petitions Committee met to continue its consideration of  #MEAction Scotland’s petition, PE1690, which calls for a review of treatment of people with myalgic encephalomyelitis (ME) in Scotland. Appearing before the committee to give evidence were Jeane Freeman, the Scottish Government’s Cabinet Secretary for […]

The Grace Charity For ME

ME

    From The Grace Charity site.   If you have M.E., the following might help you practically: G.P. If anyone can recommend good GPs in the Maidstone area for M.E. sufferers, please let us know. Try to get a supportive G.P. They are the gateway to much needed benefits. If you can’t get a […]

Marcie Zinn Was A Force For ME

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    From Meaction. We are deeply saddened by the sudden death of Marcie Zinn, PhD, who was a dedicated researcher, advocate and person with myalgic encephalomyelitis (ME). Marcie died of sudden heart failure on Dec. 28, 2019. Marcie and her husband, Mark, founded the Neurocognitive Research Institute (NCRI), a non-profit that specializes in 3D-mapping of the […]

The Temporary ME/CFS And Fibromyalgia Recovery Stories – What Can They Tell Us ?

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  By Cort Johnson in Health Rising.   In 2015, Dean Echenberg, MD, PhD, a former public health official and Director of Disease Control in San Francisco at the height of the HIV/AIDS epidemic, had a question. His own course of ME/CFS had been anything but smooth. Echenberg had experienced years of illness punctuated sometimes […]

Mayo Clinic Research Discovers A Molecular Switch For Repairing Central Nervous System Disorders

Research

  From The Mayo Clinic.   ROCHESTER, Minn. — A molecular switch has the ability to turn on a substance in animals that repairs neurological damage in disorders such as multiple sclerosis (MS), Mayo Clinic researchers discovered. The early research in animal models could advance an already approved Food and Drug Administration therapy and also could lead to […]

The Hollow Man

Lost

  By Andrew O’Connor in ABC News.   The catastrophic collapse of Tony Wallace’s life began slowly and silently. An episode of flu. A persistent illness. A feeling of fatigue. A sense something was not so much wrong, as not quite right. Over time, his ambiguous symptoms have morphed into a condition that defies medical […]

When The Triggers For Your Illness Are Constantly Changing

Lisa

    By Lisa Alioto in The Mighty.   For the past six years I have lived with myalgic encephalomyelitis (ME). It’s a multi-system disease that affects the neurological, endocrine, immune and energy metabolism systems. Its hallmark symptom is post-exertional malaise (PEM). PEM is a reduction in functioning and a severe worsening of symptoms after even minimal exertion. […]

We Celebrate The Life And Legacy Of A Warrior For ME

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  From #MEAction.   It is with heavy hearts that we share the passing of ME community advocate, Cindy Siegel Shepler. Cindy lived with myalgic encephalomyelitis (ME) and multiple other health issues. She dedicated much of her increasingly limited time and energy to advocacy, increased awareness, and increasing research funds for ME. She had a […]

Trial By Error: Shaky Evidence For Signs Of Functional Neurological Disorders

David Tuller

  By David Tuller, DrPH One of my goals next year is to write more about so-called “medically unexplained symptoms,” also known as MUS. The term MUS might be useful as a descriptive name for the large category of phenomena that lack a proven pathophysiological pathway. But in the medical literature, and in the minds […]

“Something Completely Different”: Ian Lipkin Talks At The CDC On ME/CFS

Dr Ian Lipkin

By Cort Johnson in Health Rising.   The talk was titled, “Now for Something Completely Different: A microbe hunter turns to ME/CFS”. Except that Ian Lipkin is not just any microbe hunter: for many people, he’s THE microbe hunter. Internationally known for his breakthrough work on Bornavirus, SARS, MERS, tick-borne illnesses, and others, and his […]

BMJ Should Retract Flawed Research Paper On Chronic Fatigue Syndrome

David Tuller

    By David Tuller in Statnews.com.   Few journals have been more admirable than The BMJ (formerly the British Medical Journal) and some of its sister publications under the BMJ brand in highlighting issues of direct significance to health care consumers. So it is baffling — and troubling — when BMJ editors fail to […]

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