Doctor to patient: The bad news is you have disease unknown to medical science – the good news is I’m going to name it after me.
Where do the names of diseases, illnesses, conditions and syndromes come from? The history of the way we give names to diseases is colourful and controversial. It is a story of confusion, national rivalries, stigma and controversial scientists. The names we give to diseases reflect our current medical knowledge, but they are also a product of our societies. This is a fascinating historical journey.
Many of the names of illnesses have traditionally been eponymous. Medical eponyms are terms used in medicine that are named after people, and less frequently places or things. Although there are eponyms from patients such as Lou Gehrig disease (ALS), it is far more typical to take the name of the discovering doctor or scientist – Creutzfeldt-Jakob disease, Chagas disease, Tourette syndrome, Asperger’s syndrome and Hodgkin’s lymphoma are well-known examples. One thing I did not know was that Salmonellosis is an eponym too. The epidemiologist Theobald Smith, who isolated the bacteria in 1885, named the bacteria salmonella in honour of his boss, Daniel Elmer Salmon, a veterinary pathologist in charge of a U.S. Department of Agriculture’s Bureau of Animal Industry research program during the late 19th century.
Sometimes the name taken can be controversial. Reiter’s syndrome is “a medical condition typically affecting young men, characterized by arthritis, conjunctivitis, and urethritis, and caused by an unknown pathogen, possibly a Chlamydia.” The problem is that Hans Reiter was an infamous Nazi war criminal who carried out terrible experiments on inmates at Buchenwald. He had discovered the syndrome in 1916 when he treated a soldier during the First World War. Now it is often referred to as reactive arthritis.
I do think that it rather bizarre to have a condition disease or a deadly microbe named in your honour. I suppose it is a way of achieving immortality, but I wouldn’t think that it would make your future in-laws feel particularly well-disposed towards you. There has been a move away from such eponyms. There are a number of reasons for this. These names provide no information to medical professionals. And imagine having to memorise all these surnames. The condition Mayer-Rokitansky-Küster-Hauser Syndrome, which involves congenital anomalies in or absence of the uterus and vagina, must be a nightmare to remember. This is why is also known as Müllerian agenesis or RKHS syndrome. What’s more science has become a much more collaborative enterprise, where it has become increasingly difficult to name just one person. I love the human stories behind eponyms, but I can see they may belong to another era.
What do Lyme Disease, Guinea Worm, German Measles, Ebola, and Lassa Fever have in common? They belong to another branch of eponymous name, ones which refer to the place where the disease allegedly originated. I use the word allegedly for good reason; many times the name does not reflect the medical reality. The classic case of this is the so-called Spanish Flu of 1918. There was nothing particularly Spanish about this catastrophic epidemic, which left more than fifty million people dead. Why did Spain get the blame for this? As Spain was neutral in WWI, the Spanish government did not censor newspapers, as happened in the countries which were fighting. They did not want to lower morale. The Spanish press did print information about some deaths in Madrid, which were thus believed to have been the first cases. In fact, there had already been an outbreak in the USA, but it was hushed up.
This human tendency to blame whatever country they hate the most other areas for an illness is best shown in this map I found online. The disease in question is syphilis. Click on ther image:
AIDS provides another example of our tendency to lay the blame on unpopular social groups. It was originally known as GRID (gay related immune deficiency). I also saw 4H disease (haemophiliacs, homosexuals, heroin users, and Haitians. The names can also be misleading. In the case of swine flu it was humans who infected pigs, not pigs infecting humans. Nevertheless, a 2009 pandemic in Egypt led the Egyptian government to order a comprehensive hog slaughter. The pigs belonged to the much set-upon Coptic Christians. There was no scientific justification for the cull.
All this has led to the WHO introducing guidelines. You can find them online:
The best practices state that a disease name should consist of generic descriptive terms, based on the symptoms that the disease causes (e.g. respiratory disease, neurologic syndrome, watery diarrhoea) and more specific descriptive terms when robust information is available on how the disease manifests, who it affects, its severity or seasonality (e.g. progressive, juvenile, severe, winter). If the pathogen that causes the disease is known, it should be part of the disease name (e.g. coronavirus, influenza virus, and salmonella).
Terms that should be avoided in disease names include geographic locations (e.g. Middle East Respiratory Syndrome, Spanish Flu, Rift Valley fever), people’s names (e.g. Creutzfeldt-Jakob disease, Chagas disease), species of animal or food (e.g. swine flu, bird flu, monkey pox), cultural, population, industry or occupational references (e.g. legionnaires), and terms that incite undue fear (e.g. unknown, fatal, epidemic).
The reality is that it is really hard to find the right name. Let’s take Creutzfeldt-Jakob disease. I have almost no idea about the work of Hans Gerhard Creutzfeldt and Alfons Maria Jakob. They did seem to have interesting lives. Creutzfeldt, who was 54 years old when WWII broke out, was not a Nazi supporter. Indeed, he saved a number of people from certain death in concentration camps, and also managed to rescue almost all of his patients from being euthanized under the Nazi Aktion T4 program. Be that as it may, the name is not very informative. However, transmissible spongiform encephalitis means little to me. However, there are worse examples. If you look at the longest words in the 20-volume Oxford English Dictionary, they all seem to be medical in nature, but this is my intuition.
hepaticocholangiogastrostomy – 28 letters
spectrophotofluorometrically – 28 letters
pseudopseudohypoparathyroidism – 30 letters
These mash-ups of Latin and Greek roots are just incomprehensible to me.
The longest word in any of the major English language dictionaries is pneumonoultramicroscopicsilicovolcanoconiosis, a word that refers to a lung disease contracted from the inhalation of very fine silica particles, specifically from a volcano; medically, it is the same as silicosis. The word seems to have been deliberately coined to be the longest word in English. What some people will do to get attention! In the end when it comes to epidemics, you also need a word that is catchy, that alerts the public to the dangers. To do all of this does strike me as extremely complicated. It is very difficult to control language. we may well need to develop a dual system – one for the public and another for professionals.
If you are interested in this topic, there are a couple of interesting podcasts: