Today, May 12, is World ME/CFS Awareness Day — a day dedicated to raising awareness for people living with ME/CFS: for the burden of carrying this illness, the impact it has on daily life, and the ongoing struggle for better diagnosis and treatment.
Anyone looking back at the history of ME/CFS quickly notices something striking: over the years, ME/CFS has had many different names. Those names reflect the long search for a better understanding of the disease. What kind of illness was this? Where did it come from? Why were people not recovering?
One of the early names was Akureyri disease. This name refers to Akureyri, a town in northern Iceland. In 1948 and 1949, a remarkable outbreak was described there. People developed symptoms resembling a polio infection. Within about three months, 488 people became ill. Because it was still unclear what exactly was happening and what caused it, the illness was named after the place where it appeared: Akureyri.
A few years later, something similar happened in London. In 1955, hundreds of staff members at the Royal Free Hospital became ill. The hospital had to close temporarily. There too, the illness was given a name referring to the location: Royal Free disease. Later, the name myalgic encephalomyelitis was introduced, and the term ME appeared for the first time in scientific medical literature. Similar outbreaks occurred during the 1960s and 1970s in Canada, England, and the United States, with comparable symptoms and many affected patients.
In the mid-1980s, another unexplained flu-like illness was described in and around the town of Tapanui in New Zealand. Colloquially, it became known as Tapanui flu. A name that almost sounds harmless, but for many patients this was not something that passed after a few days. The name mainly reflected what people saw at the time: a flu-like onset without proper recovery or an explanation of what was happening. In New Zealand, the term Tapanui flu is still sometimes used to describe ME/CFS.
And then there is the dreadful term yuppie flu. This term emerged in the 1980s and became a highly unfortunate nickname. It suggested that the symptoms of ME/CFS were simply burnout and mainly affected young, busy professionals: people with packed schedules, demanding jobs, and fast-paced lives. That image persisted for a long time, but it did not reflect reality.
In the Netherlands, the term chronic fatigue syndrome is still widely used. For many patients, this feels too narrow. Fatigue certainly plays a major role, but the name can create the impression that ME/CFS is mainly about being tired, while the illness affects the body and daily life much more profoundly.
Finally, ME/CFS is also often named after the infection that triggered it, such as Q fever, Lyme disease, or SARS-CoV-2/COVID-19. Although the chronic symptoms cannot be distinguished from those of “other” ME/CFS patients, the term ME/CFS is sometimes still not used in these cases. This can create confusion for both patients and non-patients alike. It is also confusing that although the cause of the illness may be known, it is still not well understood why recovery is so difficult.
At the same time, much positive progress has been made in recent years. ME/CFS is increasingly being studied in a targeted way and from a biomedical perspective. Scientists are investigating, among other things, the immune system, energy metabolism, the nervous system, blood vessels, and the way the body responds to exertion. Awareness of ME/CFS is also growing outside the scientific world, partly due to post-COVID. More and more people have (unfortunately) become familiar with terms such as PEM and POTS. What was once often difficult to explain is slowly gaining more language, more research, and more recognition.
On May 12, attention is focused worldwide on ME/CFS — on the people living with it, and on the knowledge and care that are still urgently needed.