Needed for long Covid: a less authoritarian approach to understanding, treatment

The public has become increasingly concerned about long Covid — ongoing symptoms and disabilities after an acute Covid-19 infection has passed — thanks in part to an intense stream of news and long-form journalism about the condition.

Most of this coverage has focused on the largest group of people with long Covid, who often have milder initial infections, and who are generally younger and healthier than those threatened by acute infections. People with long Covid describe the condition as debilitating, with everyday activities like work or mild exercise difficult or impossible to do months after the initial infection. Because symptoms are variable and wide-ranging, this form of long Covid is difficult to characterize. One group of British physicians described it as a “non-specific clinical picture, often dominated by fatigue and breathlessness.”

Mainstream media outlets have presented long Covid as a poorly understood post-viral disease, and offer regular updates on potential biological explanations, such as autonomic dysfunction or the development of autoantibodies that attack the brain, heart or immune system. The takeaway from this coverage has been growing public frustration with clinicians, because as serious as long Covid symptoms are, clinicians often dismiss them as psychosomatic. This approach has led to anger over medical gaslighting — when patients’ reports of physiological suffering are not construed as credible — and fear that the medical profession is failing to recognize a serious threat.

Up to now, there’s been relatively little in mainstream media from clinicians explaining and defending their decisions to manage long Covid as a psychosomatic condition rather than a poorly understood disease.

That may be shifting. In a recent First Opinion, pulmonary and critical care physician Adam Gaffney encouraged readers to resist the idea of long Covid as post-viral disease unless it is verified by biological evidence. In the Wall Street Journal, psychiatrist Jeremy Devine emphatically defended the view that long Covid has been “invented” by patient groups. In an even more recent letter to The Guardian, psychiatrist Michael Sharpe defended psychological management of long Covid symptoms.

This is a positive change in public discourse. As long as medical professionals do not feel free to defend the psychosomatic approach publicly, the care of people with long Covid will continue to be largely driven by reasoning that’s mysterious to the public — even in medical centers with long Covid clinics — and animosity between the public and the medical profession will continue to grow.

More than that, without open public debate, long Covid care will likely remain unchanged by the outcry of public frustration in the media about not taking symptoms seriously, particularly with women.

That said, I don’t agree with the Gaffney-Devine-Sharpe approach. I am a philosopher and bioethicist whose research has long been focused on the line that distinguishes biomedical conditions from psychosomatic ones. As someone who investigates philosophical confusion, scientific shortcomings, and unethical practices around the mind-body diagnostic line, I am as unsurprised by the long Covid battle as I am concerned about it.

In fact, I am gravely concerned that the standoff forming between the public and the medical profession will become a defining feature of health care, one that could reverberate far beyond the scope of long Covid for years to come.

To avoid that harmful result, as the challenge of long Covid becomes central to public discourse, we must develop more productive forms of collaboration between the public and the medical profession on long Covid care.

As a small first step in that direction, I have three points of advice for medical and mental health professionals who pursue public discourse about medical skepticism regarding long Covid.

One: Recognize that public frustration with medical skepticism emerges from a perception of authoritarianism, a sense that long Covid care is driven by dictatorial pronouncements about matters beyond clinicians’ expertise. Patients’ stories in the media relay an urgent need for relief, and fear that relief will not come as long as doctors reject the medical seriousness of the problem. But they also express a kind of frustration with the medical profession that can only be described as outrage, as if clinicians are claiming authority in areas where patients are clearly the experts.

To most people, substantial physical suffering and disability are certainly evidence of disease — not proof, but evidence. They expect clinicians to construe them as such, as a matter of respect for individuals’ basic capacity for self-understanding.

It is reasonable to assume that people living with long Covid have considered psychological explanations and, on the basis of firsthand knowledge, ruled them out. Assuming that this conclusion does not serve as plausible evidence of disease is easily seen as outrageous, even offensive.

The jury is still out on the question of whether long Covid symptoms are caused by biological processes directly tied to Covid-19 infection. The National Institutes of Health has only just begun to dig into the $1.15 billion allocated for research that might lead to biomedical understanding of the condition. Until it produces results, one way or another, the public will find it authoritarian for clinicians to discount patients’ reports as evidence of disease.

Two: Lessons on mind-body integration will never address frustration with authoritarianism regarding any condition. It is true that psychosomatic suffering and disability are every bit as real to those experiencing them as signs and symptoms caused by biomedical disease. To doubt that is to stigmatize mental illness. But the public has had decades to take in that message now, and there is every indication that it’s gotten through.

In the debate about long Covid, psychosomatic explanations are not rejected on the basis of stigma or resistance to the seriousness of mental illness. They’re rejected because the public fully accepts the medical reality of psychosomatic conditions, so they expect diagnoses of that kind to meet usual scientific standards for caution and avoidance of risk.

When clinicians default to psychosomatic reasons for long Covid at this stage, before they have scientific evidence to support that conclusion, and before researchers have explored biological explanations, it seems that they are valuing their own clinical hunches more highly than they value science. This deepens fear of harm in long Covid patients, and in the general public, as it deepens the sensibility that clinicians approach the challenge of long Covid in dangerously authoritarian ways.

Three: Acknowledge that long Covid predominantly affects women and acknowledge the social meaning of this. When individuals with a condition and the general public construe medical skepticism about long Covid as authoritarian, that sensibility carries with it centuries of harmful — often deadly — health care inequity for women at the hands of male doctors. Every sentence of public discourse about long Covid should be crafted with sensitivity to the seriousness of this issue.

There’s firm evidence of gender inequity in cardiac care, pain management, stroke care, joint replacement, cancer screening, and more. Still, in 2021, reports in the medical literature continue to inform clinicians that women’s symptoms are two times to 10 times more likely to be psychosomatic than men’s. Scientific evidence for that disparity has always been weak at best, given the failure to consider the role of gender bias in research. That problem is now magnified by the ongoing absence of cautions or caveats as the threat of the medical gender gap has become so clear.

Though there are viable biomedical explanations for why more women than men develop long Covid, this female predominance is often construed as evidence supporting a psychosomatic explanation. That unspoken reasoning is, justly, a profound source of frustration for the public.

I believe that medical professionals who agree with the psychosomatic perspectives of Gaffney, Devine, and Sharpe should engage in public discourse that not only explains their views but allows it to be subject to productive public criticism. To make that possible — to circumvent the unproductive outrage that so often occurs when clinicians defend that position — uncertainty is a far better approach than authoritarianism.

Instead of pronouncements from on high about patients’ limited understanding of their own experiences, genuine humility is needed from clinicians and clinical authors about the deep uncertainty that defines the challenge of long Covid. Rather than lessons about mind-body integration, we need genuine concern about the possibility that the psychosomatic explanation for long Covid is mistaken, and discussion of the science that would explain why it’s safe to take that risk.

Most importantly, we need professional discussions of long Covid to acknowledge the continuing legacy of harm caused by unscientific perspectives on mind and body in women’s health care. For the sake of long Covid patients, clinicians’ public discourse about long Covid should always include discussion of exactly what steps have been taken, or should be taken, to avoid this injustice.

Diane O’Leary is a philosopher and bioethicist.

Hear O’Leary talk more about long Covid on an episode of the “First Opinion Podcast.”