ME World Perspective

Airports Are Failing Disabled Passengers, And We Are Tired Of It

Air Travel

    By Elizabeth Wright in The Guardian.   Returning from Rome after a holiday, my plane taxied to its stand and I waited for all the more ambulatory passengers to disembark. I had wheelchair assistance booked – a much-needed service for someone who, like me, struggles to walk long distances – and the drill […]

ME/CFS In Young People: A Primer

Russell Logan

    By Russell Logan in Shout Out About ME.   Leading international me/cfs experts have written a primer for diagnosing and managing the illness in children and adolescents. The new primer lifts the veil on a poorly-recognized disease ravaging our most vulnerable, leaving some children wheelchair dependent, housebound, or bedbound and many more unable […]

Post Seventeen – The PACE Trial Scandal

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    From the Blog, puffins&penguins&me   I have been wanting to write about The PACE Trial for some time, about the background, the controversy and where we are at today. I have tried, but unlike my usual posts it is very technical, involves a lot of research and there’s a lot to cover. I just don’t […]

Exercise Tests Suggest Autoimmunity Causes The Exertion Problems In Chronic Fatigue Syndrome, Fibromyalgia And POTS

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  By Cort Johnson in Health Rising.   Researchers and doctors get interested in ME/CFS in different ways. Many have a personal connection, but for David Systrom,  a pulmonologist, it was all about demand. He didn’t seek chronic fatigue syndrome patients out – quite the contrary.  When Systrom was given control of a clinical cardiopulmonary […]

M.E. Meant This Blog Took Me Several Months To Write

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    By Isabel Walter in Huffpost.   On holiday in the Peak District in June 2007, three months after being diagnosed with ME, I sat down one afternoon with a pile of postcards and discovered I could no longer write. The words were clear in my head, but the pen in my hand made […]

Why Are Doctors And Patients Still At War Over M.E.? How The Best Treatment For The Debilitating Condition Is One Of The Most Bitterly Contested Areas In Medicine

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  By Jerome Burne For The Daily Mail.   Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It’s linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — ‘like a dead battery’. The condition first reached mainstream consciousness in the Eighties following […]

The Time Is N.O.W. – National Women’s Advocacy Organization Joins The Fight For ME/CFS

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By Cort Johnson in Health Rising.   This one action demonstrates why it’s so important to have a full-time professional advocate for chronic fatigue syndrome (ME/CFS). The National Organization for Women (N.O.W.) is not a small organization; it has 550 chapters in all 50 states. It’s a natural ally for a disease that’s a) dominated […]

‘The Most Common Disease You’ve Never Seen’: How One Woman Turned Her Illness Into A Life-Changing Film

Jen Brea TED

    By Alice Vincent in The Telegraph.   Jennifer Brea was 28 when she was bedridden with a high fever. As she explains, “I got better, but something wasn’t right.” She, like millions of people worldwide, had contracted Chronic Fatigue Syndrome, or myalgic encephalomyelitis, otherwise known as ME. Suddenly, her life as she knew […]

Stanford: Scientist Searches For Answer To His Son’s Devastating Condition

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  By Lisa M. Kreiger in The Mercury News.   As a renowned Stanford scientist, Ron Davis has a deep appreciation for the power of modern medicine. And yet an explanation for the disease afflicting his own beloved son eludes him. Son Whitney, 33, suffers from such severe Chronic Fatigue Syndrome that he is bedridden, unable to […]

Chronic Fatigue Syndrome – A Roadmap For Testing And Treatment

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  Introduction Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) and usually abbreviated to ME/CFS, is a neurological condition characterized by cognitive dysfunction, mood disorders, fatigue, post-exertional malaise, and an array of other symptoms. The following guidelines will help you determine: (1) whether you have chronic fatigue syndrome, and if so: (2) which laboratory […]

The Loneliness Of Having An Illness Science Doesn’t Understand

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  By Lily Carollo in Science of Us.   If someone told you she had something called chronic fatigue syndrome, you might not take her very seriously. Who among us isn’t tired all the time? And yet chronic fatigue is a condition with a name that belies the very serious malady it’s meant to convey. While exhaustion is indeed […]

Major Stanford Study Indicates Chronic Fatigue Syndrome (ME/CFS) Is Inflammatory Disorder

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  By Cort Johnson in Simmaron Research.   There’s been a great deal of controversy and confusion surrounding ME/CFS — even whether it is an actual disease. Our findings show clearly that it’s an inflammatory disease and provide a solid basis for a diagnostic blood test.” Mark Davis There’s nothing like a high-profile study from a […]

Survey Suggests Chronic Fatigue In Canada Is ‘Even Worse Than We Thought’

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    From CTV News.   A new survey suggests chronic fatigue syndrome may be far more prevalent in Canada than previously thought, and more widespread than many more well-known conditions. The suggestion is based on a Statistics Canada survey in which respondents were asked whether their doctor had diagnosed them with chronic fatigue or […]

Metabolic Switch May Bring On Chronic Fatigue Syndrome

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  By Andy Coghlan in New Scientist. It’s as if a switch has been flicked. Evidence is mounting that chronic fatigue syndrome (CFS) is caused by the body swapping to less efficient ways of generating energy. Also known as ME or myalgic encephalomyelitis, CFS affects some 250,000 people in the UK. The main symptom is persistent […]

Severe ME Day 2017; Sophia Mirza, Inflammation Of The Brain And Spinal Cord And The Role Of The Gut

Sophia Mirza

  From Let’s Do It for Myalgic Encephalomyelitis.   Severe ME day is an initiative of the 25% ME group for the severely affected. It is held annually on 8th August to commemorate Sophia Mirza’s birthday and it’s purpose is to remember and raise awareness of those deceased and severely affected by ME. Sophia Mirza (1973 – 2005) died in […]

Body Count: The Tragic Stories Of Severe ME – Commemorating Severe ME Day On August 8

Severe ME

  By Russell Logan in SHOUTABOUTME.   “…the opposite of life is not death, it’s indifference” — Elie Wiesel They’re known as the ‘invisible’ ones, the severe Myalgic Encephalomyelitis (ME) patients that governments, doctors, researchers and communities refuse to acknowledge. The US CDC even renamed the illness Chronic Fatigue Syndrome (CFS) after a single symptom ‘fatigue’ to deliberately […]

OMF Symposium To Provide First Look At Metabolomic / Immune Results In ME/CFS

RonDavis

    By Cort Johnson in Health Rising.   The Real Action – The Working Group The Open Medicine Foundation’s “Community Symposium on the Molecular Basis of ME/CFS” is coming up next week. The Symposium follows a two-day workshop – an ME/CFS research jam session that dozens of researchers and MD’s will participate in. Davis […]

The European ME/CFS Biomarker Landscape Project: An Initiative Of The European Network EUROMENE

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  From The Journal of Translational Medicine.   Authors and Contributors as listed in article. Abstract Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a common and severe disease with a considerable social and economic impact. So far, the etiology is not known, and neither a diagnostic marker nor licensed treatments are available yet. The EUROMENE […]

A New Clue Is Helping To Solve The Mystery Behind Chronic Fatigue Syndrome

Research

  By Leah Rosenbaum in Seeker.   A recent study shows that cytokines are elevated in patients with severe chronic fatigue syndrome, potentially paving the way for a more definitive test and cure. Almost everyone feels sleepy in the morning without their first cup of coffee. But there’s a big difference between “I need caffeine” fatigue […]

Angry Scientists Throw Insults At Each Other Over The Results Of A £5 Million Taxpayer-Funded Study Into Chronic Fatigue Syndrome

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    By Stephen Matthews in Mail Online.   Angry scientists are throwing cheap insults at each other regarding the ‘flawed’ results of a landmark £5 million British study on chronic fatigue syndrome. One medical journal dedicated its entire August edition to ripping apart the ‘unreliable’ trial, which was funded by taxpayers. In response, three […]

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