How Disease Names Change-and Why PCOS Is the Latest Example

Most people hear the names of medical conditions every day without giving them a second thought, but those names shape how we understand illness, how doctors diagnose it, and how society treats the people who live with it.

Polycystic ovary syndrome (PCOS), a condition affecting an estimated 170 million women worldwide, has now been renamed after researchers concluded the term no longer accurately reflected the condition itself.

The updated name-polyendocrine metabolic ovarian syndrome (PMOS)-follows 14 years of collaboration between researchers and patients, and reflects a growing understanding that the condition is a whole-body hormonal and metabolic disorder rather than one primarily defined by ovarian cysts.

Why Disease Names Change

Medical professionals tend to focus on mechanisms and classification, while patients focus on lived experience-and those different priorities often lead to different ideas about what a disease should be called.

Dr. Richard Barnett, a historian of medicine, notes that disease names often change as scientific knowledge and patient perspectives evolve.

Barnett said: "This seems to be happening with PCOS, where the shift reflects not only scientific developments, but also the experiences and perspectives of patients.

"Over the years, patients have increasingly asserted a shared identity and collective power, seeking a voice in how their conditions are described and diagnosed."

Stigma and Social Harm

Sometimes a disease name causes real‑world harm, fueling racism or moral judgment.

One recent example is monkeypox, which was renamed "mpox" in 2022.

The original name dated back to 1958, when monkeys in a Copenhagen laboratory developed a rash caused by a virus related to smallpox. But researchers later found the virus was more commonly carried by small mammals such as rodents.

The World Health Organization later changed the name after concerns emerged over "racist and stigmatizing language online, in other settings and in some communities."

But mpox’s name wasn’t changed solely on reducing stigma, explained Dr. Richard A. McKay, a college lecturer and director of studies in history and philosophy of science.

He told Newsweek: “The decision to change the name was shaped in part by a desire to reduce stigma, and in part for greater accuracy.

“Like the change for PCOS, the name change was also carried out as part of a consultative process.”

HIV/AIDS and Moral Panic

The HIV/AIDS epidemic provides another example of how names can shape public understanding.

In 1982, the term "GRID"-Gay-Related Immune Deficiency-emerged, reinforcing the false belief that the illness only affected gay men.

Barnett told Newsweek: "GRID reinforced moral panic and judgment surrounding the disease."

By September 1982, the Centers for Disease Control and Prevention (CDC) introduced Acquired Immune Deficiency Syndrome (AIDS).

"The eventual adoption of a more neutral and descriptive name helped move away from those associations," Barnett said.

McKay, a historian who specializes in sexuality, disease, and public health, told Newsweek that people who weren't gay soon began to be diagnosed, yet the early framing had already shaped media coverage and public understanding.

"For years afterwards the association between the disease and a particular stigmatized community hampered efforts to circulate effective health education,” he said.

Names Honoring (or Discarding) Doctors

In the 19th and 20th centuries, it became common to name diseases after the physicians who first described them. But those labels don't always last. When new evidence emerges-especially about who a discoverer really was-a name can be reconsidered or replaced.

One example is Asperger syndrome, a former diagnostic label now grouped under Autism Spectrum Disorder (ASD).

In 2013, the American Psychiatric Association formally folded the diagnosis into the broader ASD category due to controversy surrounding the discoverer, Hans Asperge

It was officially renamed to Autism Spectrum Disorder (ASD) in 2013 by the American Psychiatric Association (APA) due to controversy surrounding the discoverer, Hans Asperger.

The Austrian pediatrician known for his pioneering 1944 study on childhood autism became the focus of scrutiny when recent allegations suggested he may have been involved in Nazi medical programs.

Barnett told Newsweek: “Some scholars argued that the name should be abandoned and the condition merged into the broader category of the autistic spectrum disorders.”

Why Names Will Keep Changing

There is no single process for naming diseases. Names emerge from scientific context, social pressures, and the circumstances of discovery. They can be shaped by political events, patient movements, and shifting moral landscapes.

Barnett concluded: "Disease names are always provisional because they are human constructs, and changing a name can reshape the political and moral meanings attached to a condition."

Reference

Bryer, Josh, et al. "Monkeypox Emerges on a Global Scale: A Historical Review and Dermatologic Primer." Journal of the American Academy of Dermatology, vol. 87, no. 5, Nov. 2022, pp. 1069-74. PubMed Central, https://doi.org/10.1016/j.jaad.2022.07.007.

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This story was originally published May 14, 2026 at 6:48 AM.