Written by Sebastiaan Crul
August 9, 2021

It’s taken a while, but the public is starting to take long COVID seriously. Journalists are writing scores of articles to discuss the mysterious wide range of symptoms experienced by patients and report on the scientific search for possible biological explanations. In addition, the government has realized that the lack of understanding of this mysterious condition is a great biopolitical instrument to target youth: long COVID is also affecting them after mild infections.

Meanwhile, physicians remain divided about all this attention. Some simply ask for more caution when talking about long COVID. They acknowledge that the condition is not “in the mind” but until we have found a biomedical explanation, we should be careful in assessing it. Others claim there is a hidden agenda on the part of physiatrists and advocates of the biopsychosocial model at work, while the most skeptical physicians suggest journalists themselves are an important cause of the super-spread of the “disease”. Endlessly listing the wide range of symptoms makes people believe they have the illness, it is said. Evidently, this is worrying COVID long haulers, who fear new waves of medical gaslighting from professionals, similar to the dismissal of many patients who suffer from chronic fatigue syndrome (ME/CFS).

The core of the problem is perhaps not the uncertainty of the condition itself, but the lack of acceptance of diagnostic uncertainty in the culture of medicine, prompted by the intense focus on evidence-based medical practices, as bioethicist Diane O’ Leary points out in this article. Currently, unexplained symptoms are almost immediately (at least implicitly) explained as having a psychogenetic cause. Instead of humility about the disease, she proposes, we should develop a truthful humility about diagnostic uncertainty.

Burning questions:

  • Which practical guidelines can physicians follow if they want to embrace diagnostic uncertainty?
  • How can we find a balance between underdiagnosis and biological overtreatment with the risk of iatrogenesis?
  • What is the role of patients in this story? Will they ever accept more diagnostic uncertainty?