Some researchers have taken issue with the newly renamed polyendocrine metabolic ovarian syndrome, saying it ‘perpetuates the very problem it was meant to resolve’.
Polycystic ovarian syndrome (PCOS) may have only changed its name to polyendocrine metabolic ovarian syndrome (PMOS) in May, but there are already calls for further changes, with some endocrinologists saying the new name reinforces the misconception that it is primarily a gynaecological condition.
In a commentary published in the Journal of Endocrinology & Metabolism, Mount Sinai endocrinologist Professor Andrea Dunaif and University of Chicago endocrinologist Professor David Ehrmann called the new name “scientifically inaccurate”.
They questioned why, despite more than two decades of research showing that men were also affected, the term “ovarian” was retained.
Keeping the condition anchored to a “single organ” undermined the broader clinical ownership the renaming was meant to create, the commentary read.
The authors also said PMOS comprised at least two genetically distinct conditions – metabolic and reproductive subtypes, each with “distinct genetic architectures” and “divergent long-term metabolic and reproductive trajectories”.
They deemed dismissing these findings “not scientifically responsive” and said it would likely lead to “another renaming process in the not-too-distant future”.
The call to change PCOS to PMOS was led by Australian researchers and the
scientific foundation for the renaming was outlined in the Monash-led 2023 International Evidence-Based Guidelines.
According to the US doctors, the guidelines failed to consider “genomic analyses, disease subtyping, or the literature on the male phenotype”.
Professor Dunaif, who represented the Endocrine Society at the International Workshop of the Renaming PCOS, and Professor Ehrmann argued that objections were never independently reviewed and that no organisation could assess the name or its scientific justification before its official announcement.
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Monash University endocrinologist Professor Helena Teede, lead author of the Lancet paper announcing the new name and Director of the Monash Centre for Health Research & Implementation (MCHRI), told The Medical Republic that these claims were “very easy to refute”.
She said all the concerns raised by Professors Dunaif and Ehrmann had been considered in the process.
“[The name PCOS has] caused clear demonstrable harm,” Professor Teede said.
“Essentially, completely missing the care needs for the more diverse features of this condition.”
A systematic search of 30 papers on the name change, led by Professor Teede, found only three of the five empirical studies gave patients an active role in the naming process. The other 25 papers were opinion pieces. Notably, all three were led by Teede and her colleagues.
“What you’ve got is this single discipline, [this] single country, [and] experts who are very heavily invested in the old name because they’ve made their whole career focussing on it,” Professor Teede said.
Though acknowledging their scientific pre-eminence, she told TMR the commentary “missed the point” about harms to people with lived experience, and the “need for GPs and clinicians at the frontline… to provide accurate care now, not waiting for science, which we’ve been waiting for 30 years”.
“The reason there are not subtypes in the guidelines is the evidence is not strong enough,” Professor Teede said.
While multiple subtypes had been identified by various researchers, they differed by patients’ life stages, and reproductive implications often overlapped with metabolic ones, she told TMR.
If the science arrived, she said the condition would likely be divided into variants, as had happened with diabetes.
“We’ve known about male relatives of people with this condition having some higher metabolic risks for decades, but there’s no way to make an [official] diagnosis in a male [in clinical practice],” she said.
The best way to identify male patients was to look for female relatives with PMOS.
“There are many cultures and religions, and parts of the world, where a woman’s worth is directly linked to her ability to bear children and her fertility,” Professor Teede said.
“If she is labelled with a reproductive disorder, even though, with treatment, these women can have the same family size as everybody else, labelling her as having a reproductive disorder affects her whole life trajectory and her value in society.
“So, you can sit in an elite world of scientific accuracy and not consider real-world implications… or you can recognise that lived experience is real evidence too.”
She also noted the importance of practitioners “lifting their sights” beyond reproductive health by recognising PMOS as a systems-endocrine disorder and assessing patients for all features, including metabolic, reproductive, skin, and mental health complications, throughout their lifetime.
Read the commentary here.
