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History and People
Myalgic encephalomyelitis (ME), a disease that occurs both sporadically and as cluster outbreaks, was first documented in Los Angeles in 1934. Since, there have been dozens of outbreaks recorded in the medical literature, most notably the 1948-49 Akureyri, Iceland outbreak, 1955 Royal Free Hospital Outbreak in London and the 1984 outbreak in Incline Village, Nevada. The disease's existence almost certainly predates 1934, and may have been unrecognized for centuries or misdiagnosed as hysteria, neurasthenia, and later, conversion disorder.
Myalgic encephalomyelitis was first known as atypical polio and later called "Icelandic disease" until it was officially named myalgic encephalomyelitis following the 1955 London outbreak. ME was first recognized as a neurological disease by the World Health Organization in 1969. Following the 1984 outbreak in Nevada, it was renamed and recharacterized by the Centers for Disease Control as "Chronic Fatigue Syndrome."
In 2015, the US Institute of Medicine, based on a review of several decades of research, created a new definition of the disease and proposed a new name: Systemic exertion intolerance disease. Patient advocacy and a renewed interest in the disease among clinicians and scientists have led many new research groups to join the field in recent years, prompting several new discoveries and promising treatments to be tested via clinical trials. (more...)
Florence Nightingale (1820 - 1910) was a British nurse who is considered the founder of modern nursing. She was affectionately called "The Lady with a Lamp" referring to how she carried an oil lamp during hospital night rounds. While stationed in Crimea, Nightingale developed "Crimean fever" (a bacteria infection now known as brucellosis) and never recovered. Although Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) were not defined in her lifetime, many current physicians and medical historians believe she developed ME/CFS as a result of a chronic brucellosis infection. Despite being bedbound, Nightingale continued to work until her death on advancing the nursing profession and lobbying for regulatory changes to hospitals.(more...)
David M. Tuller, DrPh, is a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health, University of California, Berkeley, California. Previously to this appointment in July 2017, he was of academic coordinator of the University of California, Berkeley's joint masters program in public health and journalism. He's worked as a reporter and editor for ten years at the San Francisco Chronicle, served as health editor at Salon.com and frequently writes about health for The New York Times. An experienced public health activist who was formerly active with ACT_UP, David Tuller covered the PACE trial results for The New York Times as health editor in February 2011 and later became an outspoken critic of the trial's methods and findings, publishing extensively on it. (more...)
Rosamund Vallings, MD, MNZM, MB, BS, is one of New Zealand’s leading authorities on Chronic Fatigue Syndrome. She served voluntarily for over 27 years as President of the Associated New Zealand ME Society (ANZMES) and later as Medical Adviser and Committee Member. (more...)
In the news
- AXA1125 clinical trial begins for Long COVID - Nov 2021
- Graded exercise therapy advised against in new England and Wales guidelines - Nov 2021
- Public health expert David Tuller reaches crowdfunding goal for another year's work, including ME/CFS and Long COVID - Oct 2021
- Graham McPhee, pwME and critic of the PACE trial passes away - Oct 2021
- Medical neglect and abuse page now on MEpedia
- New group Doctors with M.E. (DwME) launches website.
Ronald Wayne Davis, PhD., is a Professor of Biochemistry & Genetics and the Director of the Stanford Genome Technology Center at Stanford University. His son, Whitney Dafoe, is severely ill with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Professor Davis leads the End ME/CFS Project with the Open Medicine Foundation whose first project was the ME/CFS Severely Ill, Big Data Study. (more...)
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