An Introduction to Myalgic Encephalomyelitis (M.E.)

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M.E. patient Jennifer Brea while shooting the movie “Unrest.”

 

This website is designed to provide factual information about myalgic encephalomyelitis to medical practitioners, researchers, journalists, government officials, disease sufferers and their family members, and others interested in quickly gaining a basic introduction to the illness. It is presented by Paradigm Change.

Myalgic encephalomyelitis (M.E.) is a complex disease state consisting of a wide range of measurable medical abnormalities and debilitating symptoms.

Some of the core components of the illness include insufficient energy production, chronic immune inflammation, other immune system abnormalities, nervous system dysfunction, metabolic dysfunction, dysautonomia, endocrine problems, and circulatory abnormalities.

Sufferers experience a very large number of symptoms, such as post-exertional relapse (worsening after even trivial amounts of mental or physical activity), severe cognitive dysfunction, inability to sit or stand up, excruciating headaches, severe noise and light sensitivities, extreme sensitivities to foods and environmental toxicity, muscle stiffness and pain, non-refreshing sleep and other sleep disorders, dystonia, partial paralysis or other motor issues, gastrointestinal problems, thermostatic issues, seizures, chronic flu-like symptoms, various chronic infections, and certain kinds of cancer (including non-Hodgkin’s lymphoma).

An important dysfunction in the illness is abnormally low natural killer cell activity, which prevents the immune system from being able to control herpesviruses such as cytomegalovirus (CMV), human herpesvirus 6A (HHV-6A) and Epstein-Barr virus (EBV) as well as certain other pathogens.

A wide variety of other medical abnormalities – including brain inflammation – also have been found by researchers.

Individuals affected by the disease very often are active and apparently healthy until they are suddenly struck down by a flu-like illness from which they do not recover. Some patients have a more gradual onset, however.

Most sufferers become sick with the disease during the prime of life, between the ages of 20 to 50. Some children and teenagers also come down with the disease, and a few older people who have previously been healthy get sick with it as well.

Many patients die young (often of cancer, heart disease or suicide), and most remain sick permanently. Frequently they are totally disabled for decades.

The most severely affected sufferers are totally reliant on others for their care and spend all their time curled up in darkened silent rooms – unable to sit or stand, to tolerate any light or sound, to summon the strength to speak, or to focus on or articulate a thought.

The disease was named myalgic encephalomyelitis (M.E.) following a high-profile outbreak that struck down more than 300 medical professionals at the London Royal Free Hospital in the UK in 1955. (The Royal Free Hospital is pictured in the header for this website.)

The U.S. government currently takes the position that M.E. is included in the broadly defined illness category that it calls chronic fatigue syndrome (CFS), which it first recognized in 1988 subsequent to a particularly severe outbreak of M.E. in the Lake Tahoe area.

Some government agencies now abbreviate the name of this broad illness category as “ME/CFS.”

“CFS/ME” also is sometimes used, especially in the UK.

While almost all individuals with M.E. qualify for CFS diagnoses, many other individuals who do not have M.E. also may qualify. Questions of how broadly to define the illness and whether M.E. should be its own illness category separate from CFS have been the subject of large amounts of debate over the years.

More than a million Americans and 250,000 people in the UK have been estimated to have chronic fatigue syndrome. However, the U.S. studies are more than a decade old and many people believe that the illness prevalence is growing rapidly in this country.

The number of people suffering from myalgic encephalomyelitis has not been studied and is unknown.

Although the CDC now states on its website that chronic fatigue syndrome is “devastating,” the agency has historically trivialized the condition to the point that many people think that no one with that diagnosis could possibly be very sick.

Funding allocated to the condition by the NIH has historically been very low, with a high percentage of the small available budget often being used for studies focusing on hypothesized psychological rather than physiological causes and treatment strategies.

Few physicians know very much about the disease. No drugs or other medical therapies have been approved as effective for treating it.

Getting a correct diagnosis can take years. Persuading people in their lives that they have a disease that needs to be taken seriously is a real problem for many patients.

Although the disease has received increased societal attention over the past few years, many people are still unfamiliar with it or hold misconceptions about it.

This website is designed to provide basic factual information to allow those who want to learn more about the disease to do so in a time-efficient manner. Although it is designed in particular for those living in the U.S., the information here may be helpful to those in other countries as well.

Especially noteworthy is the information on Medical Abnormalities, with citations and brief descriptions of findings from more than 500 peer-reviewed studies.

Also especially useful is the information on Exercise Intolerance. It includes citations of more than 60 studies showing physiological abnormalities in sufferers’ responses to exercise, as well as more than 30 quotes from specialist doctors and researchers on the topic.

This website also includes a collection of newspaper articles and other information about the cluster outbreak of the disease in the Lake Tahoe area in the 1980’s, as well as a great deal of other historical information about the disease.

Additional information includes links to the most informative media stories about the disease from the past thirty years; a collection of various illness definitions; and links to additional patient resources.

Associated with this website is the Facebook page A New Dynamic, which shares links to news stories and other information about M.E.

This website is presented by Paradigm Change, an organization with the goal of providing information on the role of mold toxins in M.E. and other chronic illnesses.

Those signing up for occasional email updates on M.E. issues from Paradigm Change will receive a free PDF copy of the well-reviewed book Back from the Edge, which details the remarkable life story of Lake Tahoe epidemic survivor Erik Johnson.

I hope that the information on this website will be helpful to you.  Thank you very much for visiting here.

Lisa Petrison, Ph.D.
Executive Director
Paradigm Change

 

Information on this website is presented by Paradigm Change. Links on this page are in orange (no underlining).