ME Treatments And Therapies

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 […]

‘Amazing Friend’ Raising Money To Highlight ME

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  By Alexandra Bánfi in Cambrian News.   Two old school friends are on a mission to raise awareness and money for a “forgotten disease”. Mair Squire and Melissa Davies met at school in Newcastle Emlyn at the age of 11. Melissa now lives in Aberystwyth with her son Edwyn Bywood who, at the age of 15, […]

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 […]

Physio’s For M.E.

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Who we are We are a group of physiotherapists based in the UK who have recognised the issues of physiotherapy for people with ME. ​ Our aims are: – to educate and inform physiotherapists about ME and appropriate management strategies ​ – to support people with ME to feel confident in seeking physiotherapy treatment ​ […]

ME Awareness – Lightning Up Clifford’s Tower In Blue

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  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 […]

Inside I’m Dancing

Dancing in the Rain

By Chloe Leanne Brooks in M.E. Support.   I used to live by the motto “Don’t wait for the storm to pass, learn to dance in the rain” – but unfortunately, in my life this is no longer the case. My life is stormy. I can’t dance through this pain and heartache any more because my body […]

M.E Myths Debunked: Part 1

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  By Lorna McFindlow in the Cream Crakered Blog.   Two years ago, when I was diagnosed with M.E, I knew a little about it because a friend of mine had it, but other than that I was clueless. From what I was told at the time of my diagnosis, I understood that I was […]

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.

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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 […]

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 […]

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

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  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

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  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

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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 described between […]

“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

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    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 […]

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

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  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 […]

30 Years Beyond Comprehension

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  From A Life Hidden.   Today is the 30th anniversary of the day I became ill.  How surreal those words sound, even after three decades spent adjusting to them.  My illness now accounts for three quarters of my life: a span of time so vast that it defies comprehension. When I fell ill as […]

The Hollow Man

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  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 […]

How I know ME/CFS* Is A Physical Illness

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    By Una Hearne.   Introduction I am writing this to put a final nail in the coffin of the idea that ME/CFS is a psychosomatic issue; that it is ‘all in the mind’. Having both the physical illness ME/CFS (from age 16) and the mental illness Depression (since birth), I am in a […]

“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 […]

Living With An Unsociable Illness

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  From the Not Just Tired Blog.   As I’m writing this post, I’m sat in bed, having to take time out to rest, whilst we have a family member staying with us for the weekend. Enjoying listening from afar to the lively chatter, yet not a part of it. Would I not rather be downstairs, […]

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 […]

Latest From Ron Davis: More Evidence Of “Something In The Blood”

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  By Simon McGrath in ME/CFS Research Review.   Dr Ron Davis recently revealed more evidence supporting the idea that there could be “something in the blood” that drives ME/CFS. He’s been on a tour of the US East Coast, winning over scientists and clinicians, one lecture hall at a time. Open Medicine Foundation has […]

Study Finds Differences In Energy Use By Immune Cells In ME/CFS

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  From The National Institutes Of Health.   New findings published in the Journal of Clinical Investigation suggest that specific immune T cells from people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) show disruptions in the way they produce energy. The research was supported by the National Institutes of Health. “This research gives us additional evidence […]

Poor Oxygen Extraction Is Contributing To Exercise Intolerance In Chronic Fatigue Syndrome (ME/CFS)

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    By Cort Johnson in Health Rising.   David Systrom, a Harvard pulmonologist, uses invasive CPET tests to find that oxygen extraction problems at the muscle level are common in ME/CFS.   Chronic fatigue syndrome (ME/CFS) has a reputation for falling through the cracks. Test after test is run to no avail.  From the […]

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