ME Research And Researchers

‘Leave No One Behind’ – ME Awareness Day 2020

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  There has been a sense of confusion in my heart since the Covid-19 Lockdown. Maybe by writing I can unravel the unease. Thoughts on ME & Covid-19 by Corina Duyn. For the past seven weeks – 55 days – life as we knew it has changed forever. A virus which nobody can see, but […]

Welcome To Law And Health

Valerie Eliot-Smith

  By Valerie Eliot Smith in Law And Health.   “The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019  ***************************** Note: this blog works across all devices but can be viewed most easily on a computer or tablet. Thank you for visiting […]

Trial By Error: Today Is May 12th And Everyone’s Missing

David Tuller

  By David Tuller, DrPH Today, May 12th, is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND)—often shortened to International ME (or ME/CFS) and Fibromyalgia Awareness Day. Besides ME, other diseases included in the CIND group, per the May 12th International Awareness Day site, are chronic fatigue syndrome, Gulf War Syndrome and multiple chemical sensitivity. […]

The Blood Vessel Crunch: A Unifying Hypothesis For ME/CFS

Research

  By Cort Johnson in Simmaron Research.   This is another hypothesis paper that gives one hope – and makes one wonder if the authors might have a handle on what’s happening with chronic fatigue syndrome (ME/CFS). The paper proposes that a tantalizingly simple problem – an autoimmune attack on just one receptor – out […]

SEID Is Killing ME

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  From ME Advocacy. Advocating in the United States for the disease myalgic encephalomyelitis (ME) has reached a new challenge that threatens the very core of the recognition for the disease. While some advocacy organizations have diverged and taken the alarming path of partnering with the US Health and Human Services (HHS) in adopting, using […]

Study Of The Possible Conversion Of COVID-19 Patients To ME / CFS

Research

  From The Open Medicine Foundation.   Open Medicine Foundation is excited to announce the initiation of a study of patients with COVID-19 to monitor the course of their disease and its sequelae to ascertain whether they convert to ME / CFS and to study the molecular transformation if it occurs. This will involve  collection of body […]

Trial By Error: Merck Manual Still Disseminates GET/CBT Advice

David Tuller

  By David Tuller, DrPH The graded exercise therapy/cognitive behavior therapy treatment paradigm for chronic fatigue syndrome—also imposed on those diagnosed with myalgic encephalomyelitis, CFS/ME, ME/CFS, and other variants–is like the undead. This concept keeps reemerging from the fetid intellectual swamplands that spawned it, no matter how many times it is revealed as nonsense. Although […]

COVID-19, NICE And ME: Towards Litigation ?

Valerie Eliot-Smith

  By Valerie Eliot Smith   On 18 March 2020, I tweeted this: “#coronavirus is ongoing international emergency. #MyalgicEncephalomyelitis has been international crisis/scandal for decades. In US #ME continues to be marginalised by @CDCgov  & @NIH. Nevertheless #ME advocacy must continue as #ME patients everywhere remain vulnerable + invisible.”    Since that tweet, the COVID-19 crisis has continued to escalate worldwide. Given that the disease myalgic encephalomyelitis (ME) often has an […]

7 Signs That You’re Running Out Of Spoons

DessertSpoons

    By ME/CFS Self-Help Guru.   One frustrating thing about energy limiting chronic illnesses like ME/CFS, Fibromyalgia and Lyme disease, is that energy levels can fluctuate from one day to the next. Christine Miserandino’s Spoon Theory has helped many people understand the concept of rationing out your energy by relating an energy unit to a spoon, […]

For ME/CFS Patients, Viral Immunities Come At A Devastating, Lifelong Cost

Scientist using a microscope

  By Scott LaFee in USC San Diego Health.   Mylagic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness. Affected persons often cannot pursue ordinary activities — physical or mental — because of an incapacitating loss of energy and other symptoms, and may find themselves confined to bed or house-bound for years. Anyone […]

Explaining ME/CFS ? Prusty / Naviaux Study Ties Infections To Energy Breakdowns

Research Study

  By Cort Johnson in Health Rising. Unexpected synchronies are always a good sign. Many, of course, are familiar with Bob Naviaux, MD, PhD from the University of California, San Diego (UCSD). Naviaux’s metabolomic work and his Cell Danger Response (CDR) hypothesis have opened up new possible ways of understanding ME/CFS, autism and other diseases. […]

ME/CFS Research During The Time Of The Coronavirus: Shutdowns And Opportunities

Research

By Cort Johnson in Health Rising.   As we enter a second month of a more or less complete shutdown of the economy, a burning question arose – what the heck was going on with our precious chronic fatigue syndrome (ME/CFS) research?  Was it stuck in neutral or proceeding? Had our researchers, like so many […]

Trial By Error: Oxford Health Blinks, Removes Pamphlet On Post-COVID Illness

David Tuller

  By David Tuller, DrPH. In this traumatic time, small victories should be savored. Last week, I noticed a tweet from patient and advocate Tom Kindlon about a pamphlet from the Oxford Health NHS Foundation Trust, the entity that oversees NHS services in the Oxford region. Other patients and advocates also flagged it on social media and sent […]

Will COVID-19 Leave An Explosion Of ME/CFS Cases In Its Wake ?

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  By Cort Johnson in Simmaron Health.   The first SARS epidemic in 2003 featuring SARS-CoV now seems like a poor dress rehearsal for today’s SARS CoV-2 outbreak. With just 8,000 cases in total and 774 deaths, (compared to almost 1,000,000 cases and 4,000 plus deaths and rising rapidly) it seems hardly worth including in the same […]

Scientists Warn COVID-19 Could Lead To Neurological Complications In Some Patients

Research Study

By NATHAN DENETTE/THE CANADIAN PRESS. While the new coronavirus is known to cause respiratory illness, some scientists suggest it can also potentially lead to brain and nerve damage in certain patients. Beyond the typical symptoms of COVID-19, including fever, cough and difficulty breathing, doctors around the world have reported cases of infected patients with an […]

The ME Association End Of Week Research Round-Up | 10 April 2020

Research

By Charlotte Stephens, Research Correspondent, ME Association. We show below brief summaries of the research studies about ME/CFS that have been published in the last week, followed by the abstracts from those studies. This information will be included in the monthly update to the central Research Index which is made freely available as a download at the […]

Will COVID-19 Leave An Explosion Of ME/CFS Cases In Its Wake ?

Coronavirus Generic 1

By Cort Johnson in Simmaron Research.   The first SARS epidemic in 2003 featuring SARS-CoV now seems like a poor dress rehearsal for today’s SARS CoV-2 outbreak. With just 8,000 cases in total and 774 deaths, (compared to almost 1,000,000 cases and 4,000 plus deaths and rising rapidly) it seems hardly worth including in the same sentence. […]

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 […]

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 […]

ME Association Guidance: Coronavirus (covid-19) Update | 09 March 2020

Coronavirus Generic 1

  By Dr Charles Shepherd, Hon. Medical Adviser, ME Association. The ME Association information and guidance about the coronavirus that was originally issued in early February and updated again last week, will continue being updated and issued on a weekly basis. This is to take account of the rapidly changing situation here in the UK […]

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 […]

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

Darden-Burns

  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 […]

Eating Meat: Links To Chronic Disease Might Be Related To Amino Acids – New Findings

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    By Laura Brown and Kelly Jones in The Conversation.   Plant-based diets have been popular in the media recently, but research shows that going vegetarian or vegan isn’t only good for the environment, but for our health, too. Meat-rich diets are linked to a range of health problems, from heart disease and strokes to type two diabetes and some cancers. […]

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.

iit-scientists-develop-material-that-can-harvest-water-from-fog

  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. […]

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 […]

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 […]

French Researchers Discover A New Component In Blood

Blood Cells

    By Iliriana Bisha Tagani MD in Gilmore Health News.   French researchers discovered the presence of complete and functional mitochondria in the bloodstream. Ultimately, this discovery may lead to better diagnosis, monitoring, and treatment of many diseases, including some cancers.   Our blood consists of red and white blood cells and platelets bathed in […]

“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 […]

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