The medical community reacted positively, lauding the benefits of this terminological change as something that radically transformed long covid into a bona fide medical issue. “Naming [PASC] is vital,” said Bradley Sanville, a pulmonologist at the University of California at Davis, “as it gives the condition some amount of veracity that it otherwise wouldn’t have.”
But in fact, replacing the descriptive “long covid” with a medical term represents just the most recent exchange in the often contentious negotiation between patients and the medical establishment. Since the 19th century, debates about naming diseases have raised the question of who has expertise and authority: those who experience diseases or those who treat them.
In recent decades, this negotiation has sometimes revolved around issues of access to care for ailing people. Some suffering from conditions such as chronic Lyme disease and chronic fatigue syndrome lobbied hard to have their conditions medically recognized. The reasoning behind this was clear: It offered a necessary legitimation. This was not just about feeling validated; it was about creating the critical bureaucratic and therapeutic spaces to care for patients.
Naming diseases had always been, for better and for worse, a power move. In the late 19th century, various models of care, known as medical sects, shared a crowded marketplace, and the allopathic medicine that is our orthodoxy today was little more than one variant competing for patients. Most sects, such as the naturopaths, homeopaths, osteopaths and eclectics, focused less on naming disease, and instead promoted therapies that foregrounded the always-unique interaction of pathogen and an individual body. Allopathic practitioners, on the other hand, believed that the solution to disease was to be found in unlocking the mysteries of pathogenic agents, rather than in treating unique patients. This led them to focus on identifying and naming the pathogens that caused disease, claiming authority over them in the process.
The potential for greater efficiency and a desire to claim market share drove these practitioners. Whereas other medical sects required careful, attentive assessments of individual pathogenic reactions to decide upon treatment, the allopaths were confident that understanding and classifying stable diseases would lead to standard, widely applicable therapies. For homeopaths and naturopaths hoping to tailor treatments to each patient’s unique symptoms, the process of examination, diagnosis and creation of a treatment regime was not easily expanded beyond their small practices. Allopaths, on the other hand, found in their approach something much more scalable, which was an important virtue in the industrializing early 20th century.
Less waste and more production worked as well in medicine as it did in Ford’s factories, and by the 1930s allopaths had driven their competitors almost completely out of the marketplace. The sterling reputation of the Mayo Clinic, which opened its first stand-alone building in 1914, had been built on industrial efficiency. Its assembly line setup shuttled patients through the doors of perhaps a dozen physicians, each focused on a separate body system. Patients who emerged at the end had little personal interaction with their doctors, but they had been told exactly and definitively what their condition was. The product that the Mayo Clinic promised was exactly this: a named condition.
A name then offered a promise for treatment. Dubbed the “invisible revolution” by Charles Rosenberg, the doyen of American medical history, this practice of first naming and then standardizing nomenclatures reflected new commitments to internal professional cohesion and to widely effective practice. To create his bone tumor registry of 1924, the surgeon and efficiency zealot Ernest Amory Codman standardized what had been a mishmash of descriptive names for bone tumors.
The basic act of requiring all practitioners to call a set of similar observed clinical phenomena by one name enabled them to share information, both about diagnostic findings and the success or failure of various therapies. A shared language also aided in the arrangement of other medical administrative needs, including the critical — and by now rather peculiarly American — necessity of presenting an itemized bill to one’s patients.
But naming is also cultural and social, something that was abundantly clear to mid-20th-century critics of health care. Indeed, the relationship between social norms and pathologizing became obvious in 1952, when homosexuality entered into the first edition of psychiatry’s diagnostic bible, the “Diagnostic and Statistical Manual” (DSM) as a “sociopathic personality disturbance.” Considering their purview any behavior that defied social norms, the authors of this manual — the American Psychiatric Association — codified homosexuality as pathological for its perceived social abnormality.
Gay rights activists called out the politics at play. The medical designation of homosexuality reflected an overreach of medicine that merely codified preexisting lines of social prejudice. Worse than this, the DSM codified this pathology in the face of recent new evidence on human sexual behavior presented by the Kinsey Reports, which proposed a much broader continuum of the sexual “normal.” Activists charged that this practice of psychiatric pathologizing reflected the avarice of a power-hungry profession, and in the following decades modern medicine found itself facing loud criticism for “medicalizing” the population for its own gain.
The renaming of long covid to PASC bears all the earmarks of these historical legacies. Once again, renaming is an act of appropriation — one central to medicine’s knowledge-making processes from the 19th century onward. On the negative side, PASC threatens to overwrite or displace the realities experienced by patients with data from clinical studies and findings from research laboratories that are far divorced from individual patient experiences. On the positive side, it may also produce a set of useful, standard therapies that, if they are not applicable to each unique individual, are at least widely, and efficiently, applicable to most.
This model of medicine, now our orthodoxy, loses something important in its industrial efficiency, however. Though its early century proponents celebrated the lack of personal relationships as a marker of medicine’s great success, we’ve come to see depersonalization as a detriment. And of course we have come to know how discriminatory the naming of diseases can be. Pathologizing and naming can be used to define and patrol the social and political mores that divide us and legitimize troubling forms of governance.
For all of its flaws, this approach to medicine — one rooted in industrial efficiency practices — has gotten us this far. Whether this is the most effective mode of care possible, however, remains an open question. The unusual savvy of allopathic medical practitioners in riding the wave of popularity for mass production into the single most powerful medical sect thrust other, rather more “handcrafted” medical variants to the periphery as the alternatives they are to us now.
Changing the name of long-term covid symptoms exposes this history — both its benefits and flaws — which is worth recalling as Americans consider how to make health care more inclusive and equitable.