Background on Some Names Proposed to Replace “ME/CFS”

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Royal Free Hospital (2)

 

February 21, 2015

Following is some background information about some of the names that recently have been proposed as possible replacements for the name ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) by patients or advocates.

These names are presented as alternatives to ME/CFS, chronic fatigue syndrome (CFS) and chronic fatigue immune dysfunction syndrome (CFIDS), all of which have already been discussed at great length and widely used in this community.

Note:  The name SEID (systematic exertion intolerance disorder) recommended by the Institute of Medicine (IOM) committee has not yet been adopted as the official name of the disease.  It is the government’s decision whether or not to follow that recommendation, and they have not made that decision yet.

The topic of the name of the disease will be the focus of a large-scale community survey effort sponsored by ME Advocacy and Paradigm Change, to be launched in the very near future.

Please watch for it and participate!

 

Bell Cheney Peterson Disease (BCP)

These three doctors reported outbreaks of a severe disease (later identified as classic myalgic encephalomyelitis) in their communities in the mid 1980’s. Dr. David Bell was from Lyndonville, NY. Dr. Paul Cheney and Dr. Daniel Peterson were from Incline Village, NV. The reporting of these outbreaks to the government eventually led to the recognition of “chronic fatigue syndrome” as an official U.S. disease in 1988.

 

Florence Nightingale’s Disease

Florence Nightingale (1820-1910) is considered the founder of modern nursing and also was a social reformer and statistician. She lived in England and is thought by many people to have suffered from this disease.

 

Gilliam’s Disease

This name refers to Dr. Alexander Gilliam, who studied the first recorded outbreak of the disease that later was named M.E.  The epidemic occurred at Los Angeles County General Hospital in California in 1934. Gilliam referred to the illness as “atypical polio” and wrote a 100-page booklet on the outbreak for the U.S. Department of Public Health.

 

Myalgic Encephalomyelitis (ME)

This name started being used in the 1950’s to describe a series of outbreaks of a puzzling disease that had been reported starting in the 1930’s. It was coined by Dr. Donald Acheson and brought into widespread use by Dr. Melvin Ramsay. It is especially associated with the outbreak at Royal Free Hospital in London in the 1950’s. There are more than a hundred papers in the literature about the disease of ME. It currently is listed in the World Health Organization’s Classification of Diseases as a neurological disease and carries an ICD code of G93.3.

 

Myalgic Encephalopathy (ME)

This name was developed as a response to the position that there is not enough evidence in the medical literature to prove that patients with this sort of disease have brain inflammation. “Encephalomyelitis” suggests brain inflammation, a specific condition. “Encephalopathy” means an unspecified physiological pathology of the brain, a condition that encompasses brain inflammation.

 

NeuroEndocrineImmune Disease (NEID)

This name was coined in the 2000’s and has been periodically informally used. “Neuro” refers to the neurological component of the illness. “Endocrine” refers to the hormonal component, and “immune” refers to the immunological component. CFSAC voted in favor of changing the name to this in 2003.

 

Ramsay’s Disease

Dr. Melvin Ramsy investigated the epidemic of myalgic encephalomyelitis (ME) at the Royal Free Hospital in London in the 1950’s. He then spent the next three decades studying the disease and writing books about it. Because there is an existing disease named Ramsay Hunt Syndrome (associated with herpes zoster outbreaks), the use of this term for this disease might need to carry the official name of Melvin Ramsay’s Disease.

 

Royal Free Disease

Royal Free Hospital in London was the site of a highly publicized outbreak of myalgic encephalomyelitis (ME), mostly among nurses who worked there. The epidemic occurred in the 1950’s and was studied by Dr. Melvin Ramsay.

 

Sophia Mirza’s Disease

Sophia Mirza (1973-2005) was an Englishwoman who suffered from very severe M.E. She died at the age of 32. The coroner attributed her death to acute renal failure from dehydration, caused by chronic fatigue syndrome.

 

Systemic Exertion Intolerance Disease (SEID)

This is a name proposed for the disease in early 2015 by an Institute of Medicine (IOM) committee. It refers to one of the most unusual and debilitating symptoms of the disease, often described as exercise intolerance or activity intolerance.

 

Tahoe Disease

This name refers to the Lake Tahoe outbreak of a disease identified as classic myalgic encephalomyelitis in the mid 1980’s. The epidemic received a large amount of national media coverage and was highly influential in terms of the U.S. government’s official recognition of the condition of “chronic fatigue syndrome” in 1988. The Lake Tahoe area is located in northern Nevada/California.

 

-Summary by Lisa Petrison

 

Pictured Above: The old Royal Free Hospital in London, where Dr. Melvin Ramsay studied an outbreak of myalgic encephalomyelitis (ME) in the 1950’s.

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This article was originally published on the Paradigm Change blog, and comments about it may be found there.