PCOS Got a New Name. Dozens of Other Diagnoses Are Still Lying to Us.
How medical nomenclature blocks research funding and access to care
Last month, after eleven years and input from more than 22,000 patients, clinicians, and researchers across every world region, a condition affecting one in eight women was officially renamed. Polycystic ovary syndrome (PCOS) has officially been renamed polyendocrine metabolic ovarian syndrome (PMOS).
The announcement came in a paper published in The Lancet and presented at the European Congress of Endocrinology. Fifty-six leading academic, clinical, and patient organizations were involved. The rollout will take three years and require updates to clinical guidelines in 195 countries.
What’s in a Name?
The old name was wrong in almost every way. It centered the ovaries in what is essentially a metabolic and endocrine condition involving insulin resistance, excessive androgen production, and hypothalamic-pituitary dysregulation.
It described cysts that aren’t actually cysts but arrested follicles. These outdated diagnostic criteria contributed to diagnostic delays affecting up to 70% of patients.
The Lancet paper doesn’t mince words about what the old name caused. PCOS was “inaccurate, implying pathological ovarian cysts, obscuring diverse endocrine and metabolic features, and contributing to delayed diagnosis, fragmented care, and stigma, while curtailing research and policy framing” for a disease affecting 170 million people worldwide.
This is one of medicine’s most prestigious journals formally acknowledging that a name caused harm.
Now, if only they would admit the same about the PACE trial. But I digress.
If a misleading name for one condition required eleven years, 22,000 participants, and a three-year global implementation plan to correct, the uncomfortable question that follows is: how many other names are doing damage right now?
Probably more than we would like to admit. Medical nomenclature has never been neutral.
Diagnoses of certain conditions are not entertained in some clinics, as though disease existence is predicated upon personal beliefs. Positive findings indicate evidence of disease, as if it’s wonderful news to uncover a tumor. The patient failed to respond to anti-TNF therapy, as if it wasn’t the drug that failed the patient.
So much of medicine feels like theater with patients the unwitting specimens.1
Names encode the assumptions, priorities, and power structures of the time period in which they were coined. These initial definitions are propagated through medical school curricula, insurance billing codes, and grant funding applications long after the science has moved on.
The gap between what a name implies and what the pathobiology reveals can be measured in delayed diagnoses, underfunded research, dismissed patients, and needless suffering.
The map is not the territory, but in medicine, the map often has power disproportionate to its utility.
Burning a Hole in Your Stomach
Sometimes the cost of a bad name can be measured in decades of ineffective treatment. In the 1980s, Barry Marshall was trying to convince the medical establishment that peptic ulcers were caused by a bacterium.
The prevailing view was that the stomach maintains a pH low enough to denature most proteins and kill most microorganisms, so the idea that bacteria could survive there, let alone colonize the gastric mucosa and cause chronic disease, was absurd.
The name peptic ulcer disease alluded to the digestive enzyme pepsin and centered the gastric environment as the causal context.
Stomach acid was the problem. Bacteria couldn’t possibly be.
The prevailing model missed the mechanism that allows Helicobacter pylori to survive harsh stomach conditions. The bacterium produces urease, an enzyme that catalyzes the breakdown of urea into ammonia and carbon dioxide. The ammonia neutralizes the acid immediately surrounding the organism, creating a hospitable microenvironment within a gastric lumen that would kill anything else.
Marshall could not get his findings taken seriously through normal channels and famously drank a culture of H. pylori, developed gastritis, and treated it with antibiotics to prove his point. For this work, he and Robin Warren eventually received a Nobel Prize.
But for years, the name peptic ulcer disease directed clinical attention toward acid suppression, surgical intervention, and stress management while the bacterial etiology went ignored.
Shrinking the Denominator
Post-Treatment Lyme Disease Syndrome (PTLDS) is an egregious example of encoding a very specific assumption about causation that limits the research question before it is even asked.
The name implies that persistent post-infectious symptoms in Lyme disease are somehow contingent on whether the patient first received antibiotics. Post-treatment. As if the potential biological processes driving chronic symptoms require a history of treatment to occur. That’s not how immunology works.
Post-infectious syndromes can occur in patients treated promptly, in patients treated late, and in patients who were never treated or diagnosed at all. The treatment timeline is largely irrelevant to whether Borrelia burgdorferi’s effects on the host immune system produce lasting dysregulation.
Centering the name on treatment rather than infection is a choice that conveniently sidesteps the scale of the problem. If post-infectious sequelae can occur independent of treatment history, the true prevalence of long-term Lyme-related illness is dramatically larger than what current estimates capture.
The denominator is not people treated for Lyme disease. It is people who have ever been infected with Borrelia burgdorferi, which includes years of undiagnosed and untreated cases in under-surveilled populations.
To their credit, some of the most prominent researchers in this space like immunoengineer Michal Tal at MIT and microbiologist Amy Proal at PolyBio Research Foundation have effectively moved past the post-treatment framing by treating long-term Lyme disease symptoms as a post-infectious syndrome that may or may not share mechanistic features with myalgic encephalomyelitis and long COVID.
The institutional nomenclature still hasn’t caught up with emerging science. But patients don’t have the luxury of waiting to be acknowledged.
So You’re Just Tired All the Time?
My life permanently changed after a bout with swine flu. First, my doctors said it was post-viral syndrome. Then they said it was chronic fatigue syndrome. Suffice it to say, that didn’t really clear things up.
My best friend at the time responded, “So you’re just tired all the time?”
No, it’s like I can’t breathe all the time, I wanted to say, but it was no use. She didn’t understand, and she never would. She said she wasn’t like me — that she couldn’t just lay in bed and stare at the wall all day.
If she were lucky, she would never find out that it’s not a choice to be bedridden, writhing in pain, struggling to breathe, feeling as though you’re being electrocuted and strangled and set on fire all day long.
She made it sound like a lazy vacation. Most able-bodied people do.
They don’t understand that there are quite literally fates worse than death. And many patients have to endure these trials every single fucking day.
There’s no vacation from the constant pain and sleep deprivation. No way to just check out. No off days. No matter what.
Another girl in my class thought that if I wasn’t vomiting or running a fever, I should be in school. She practices internal medicine now. I wonder if any of her opinions have changed since we were in grade school together. Given the antiquated state of medical curricula, probably not.2
Myalgic encephalomyelitis is still commonly referred to by its old name, chronic fatigue syndrome. The name was chosen in the 1980s partly because it was considered less alarming than myalgic encephalomyelitis and partly because fatigue was the most obvious symptom to a field that had not yet taken the condition seriously enough to characterize its more distinctive features.
Patient advocates have fought for decades for the ME framing precisely because they understood what was at stake. A condition called chronic fatigue syndrome attracts less research funding and different clinical attitudes than a condition called myalgic encephalomyelitis.
It generates different responses from insurers, employers, and disability adjudicators. The name makes assumptions about the nature and severity of the condition.
A few weeks ago, late night host Jon Stewart made an insensitive joke comparing chronic fatigue syndrome to what researchers experience when they have to answer the same question too many times.
I doubt his team would have been comfortable making a similar joke about cancer or multiple sclerosis or kidney failure, yet the quality of life for patients with ME is far lower than that of patients with these more “validated” devastating conditions.
Warning: Audio in the video below is quite loud for those who have auditory sensitivities.
Fibromyalgia carries a similar burden. The name describes what the clinician observes, widespread musculoskeletal pain, instead of the neurological sensitization, autonomic dysregulation, and neuroimmune mechanisms that research increasingly implicates. It has historically attracted psychosomatic framing, skepticism about its legitimacy as a diagnosis, and clinical attitudes ranging from mild condescension to outright dismissal. It disproportionately affects women.
The Wandering Womb & Women’s Health
Let’s return to the original sin of medical nomenclature.
Hysteria derives from the Greek hystera, meaning uterus. For centuries, countless symptoms in women — pain, fatigue, paresthesia, seizures, paralysis — were attributed to a wandering womb. The diagnosis was not a description of biology. It was misogyny laundered as medicine.
Hysteria was a stand-in for what medicine couldn’t explain, and the name placed the inexplicability inside the patient rather than inside the field.
The word has been erased from diagnostic manuals. The clinical attitudes haven’t been.
Multiple sclerosis was diagnosed as hysteria in women for years. Myalgic encephalomyelitis was called “hysteria” and “yuppie flu” before the accumulating evidence of immune dysregulation, autonomic dysfunction, post-exertional malaise, and mitochondrial dysfunction made dismissal increasingly untenable.
Endometriosis is named for the tissue type found outside the uterus. The name describes anatomy instead of the inflammation and immune dysregulation that characterizes the condition and drives much of its pathology. It carries an average diagnostic delay of ten years, a delay that isn’t due to diagnostic complexity but a clinical culture that normalizes severe menstrual pain in women.
Premenstrual dysphoric disorder (PMDD) frames a condition with documented hormonal, neurological, and inflammatory mechanisms primarily as a mood disorder, contributing to stigma, undertreatment, and a research agenda organized around psychiatric intervention rather than the upstream hormonal and neuroimmune drivers behind it.
Conditions that disproportionately affect women are systematically named for their most visible and dismissible features. The names reflect the perspective of the clinician observer rather than the experience of the patient.
Renaming PCOS is an institutional acknowledgment that this dynamic exists and that correcting it requires deliberate, sustained, patient-centered effort. It is an argument to urgently ask and address which names currently in use are doing the same work that PCOS did for decades.
The question every clinician, researcher, patient advocate, and engaged patient should be asking is not just what to call a condition but also: What does this name prevent us from seeing? What questions does it foreclose? Whose experience does it make harder to take seriously? Who benefits from the current framing?
PTLDS forecloses the question of post-infectious prevalence in undiagnosed patients. Idiopathic forecloses the question of etiology in conditions medicine hasn’t yet taken seriously enough to investigate. Chronic fatigue syndrome forecloses the question of neurological and immunological disease in patients who have spent decades being told they are tired when they are ill.
Too often in medicine, the map is the obstacle preventing patients from receiving care. And those who have been navigating the gap between what a name implies and what they are actually experiencing have always known this.
Many are still waiting for medicine to acknowledge the truth.
Maybe that’s why Voltaire said, “The art of medicine consists in amusing the patient while nature cures the disease.”
I don’t fault my classmates. It’s easy to be ignorant or insensitive when you’re not familiar with chronic illness, especially one that has a name that completely trivializes its most devastating consequences. But once you’re entrusted with the care of people going through unbearable invisible struggles, ignorance isn’t an excuse anymore.
This piece is really powerful. The "wrong" name can cause huge amounts of damage (dismissing of debilitating diseases, lack of funding for research, increased difficulties for patients seeking community). The layers of stigma associated with certain disease labels are so distressing and take so much work to remove :( I am encouraged that now polyendocrine metabolic ovarian syndrome is the official name and hope that other areas of medicine (rheumatology first and foremost) can follow suit!
As an academic biologist, I’ve taught more premed students than I can number and am still in touch with several who’re now practicing MDs. It is the rare premed student, and is the rare MD, who’s interested in the biological science underlying pathophysiology. Getting paid for self-service puzzle solving motivates most future MDs. Careerism drives too many MDs. I’m old enough, Nita, to recall the name GRID for AIDS — talk about layering ignorant, destructive prejudices onto the name of a terrible illness! I’m new to your site and appreciate your intelligent take on medicine. I’ll likely comment often.