By David Tuller, DrPH
I wrote a post last month about the recent wave of Long Covid coverage—some of it excellent (The Atlantic) and some way over the edge in its assertions of psychogenic causation of symptoms (The American Spectator, Spiked). Then there was the seemingly sympathetic New Yorker article by a physician, with its more subtle form of patient-bashing—portraying adherents of a pathophysiological perspective on Long Covid as irrational, anti-science zealots even as the author expressed compassion for their plight.
This New Yorker piece generated a wave of criticism and push-back from many of those experiencing Long Covid—not to mention ME/CFS patients, who have confronted similar attitudes for years. Among those troubled by it was my friend and sometime co-author Steven Lubet, a professor of law at Northwestern University, who wrote the following commentary for Social Science Space, an academic site. I am reposting the essay here with Professor Lubet’s permission.
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On Taking Long COVID Seriously
By Steven Lubet
There was a time when doctors and patients inhabited a nearly “silent world,” as famously described by physician-educator Jay Katz in his 1984 book of the same name. In those days, communication ran in only one direction and trust was expected only in the other. Doctors explained things and patients listened quietly, to be followed by grateful compliance. Fortunately, medical schools have emphasized mutual communication and things have gotten much better. Doctors and patients now work together, forming a relationship in which the patient’s input is sought and experiences valued. But not always. Physicians’ receptivity turns out to have its limits, perhaps never more so than when patients organize around a demand for greater recognition.
Consider, for example, a recent New Yorker article by Dr. Dhruv Khullar, a faculty member at Weill Cornell Medical College, titled “The Struggle to Define Long COVID.” After allowing briefly that there is “little doubt among researchers that long COVID exists,” Khullar devotes much of the balance of the 6,000-word essay to his own considerable doubts about various patients’ conditions, especially those involved in patient-advocacy groups.
The problem with too many long COVID patients, according to Khullar, is that they do not appreciate medical skepticism. Rather than accept that their symptoms may be “psychologically generated,” as has often been urged by otherwise baffled treating physicians, they insist instead that the “syndrome be seen mainly as a physiological disease.” After all, says Khullar, “mental illness is still illness.” The balky patients are thus “setting rules about what kind of suffering counts.”
Khullar’s view borders perilously on a return to the silent world, in which patients are discouraged from objecting to possible misdiagnoses.
The default to a psychological explanation – when all tests are negative – has profound problems of its own. First, it implicitly assumes that every possible physiological condition can already be identified by currently available tests. Moreover, biomedical research can be delayed or inhibited once a novel syndrome is labeled primarily psychogenic. Finally, psychiatry itself has a poor historical record, having too often claimed physical diseases – including multiple sclerosis, asthma, and peptic ulcers – as psychosomatic or conversion disorders.
In any case, Khullar’s skepticism strangely vanishes when it comes to a group of long COVID denying physicians. He uncritically quotes Dr. Jeremy Devine, a young Canadian psychiatrist still in his residency, who implausibly asserts that long COVID – a worldwide phenomenon affecting hundreds of thousands or more – is “largely an invention of vocal patient activist groups.” Many diseases have at first been poorly understood, but it does not follow that they must then be deemed psychogenic.
“America has often seemed divided between two tribes,” observes Khullar, “one that ignores scientists and another that listens to them.” The long COVID advocates, he explains, belong in a third category of “people who take every precaution and yet stand in broad opposition to the scientific establishment.”
Khullar could not be more wrong. Far from opposing the medical establishment, long COVID survivors are trying desperately to get its attention. Yes, some patients are prone to exaggeration and even hyperbole, including certain leaders of the advocacy movement; others may unthinkingly blame long COVID for unrelated symptoms. But Khullar’s disproportionate focus on extreme stories – such as a patient who attributed tooth loss to long COVID – is unhelpful and misleading. The great majority of patients understand full well that objective medical research – not of the ivermectin sort – is essential to address their illness. They quite reasonably fear, however, that their experiences will be discounted and their voices ignored.
Worrying that the survivors’ movement has failed to “embrace a rational approach to its suffering,” Khullar offers his assurance that “clinicians and researchers [have] devoted their careers, however imperfectly, to helping patients.” The challenge for patients is therefore to trust their doctors and suspend their obstinate misgivings. “Dogma obscures data,” he says, and “when skepticism becomes taboo, progress grows more difficult.” If medical dogma itself has ever obstructed progress – note: it has – Khullar does not mention it.
Responding to criticism on Twitter, Khullar explained that his goal had been “to describe the challenges of diagnosing a new medical condition—not to cast doubt on whether it exists.” That will come as good news to many readers, including those who were dismayed by his patronizing reference to “people who say they suffer from chronic-fatigue syndrome,” a condition actually recognized as a “serious, chronic, complex, and multisystem disease” in a 2015 report by the U.S. Institute of Medicine.
Today’s doctors are formally taught, as Khullar puts it, that patients should have a “stronger presence . . . as authentic partners in the project of improving the human condition.” Those are noble sentiments, but they tend to give way in practice. Faced with uncertain symptoms and no clear precedents, it is understandably difficult for doctors to credit what their patients are telling them. It is so much easier to refer them to psychiatrists.
I do not doubt the benevolence of physicians like Dhruv Khullar, who sincerely wish that patients would be satisfied by their good intentions. But condescension in the name of compassion is no way to build trust.
Comments
5 responses to “Professor Lubet’s Take on The New Yorker’s Long Covid Article”
One of the worst problems of the default to a psychological explanation is that if/when patients don’t respond to psychological therapy then they’ll likely be prescribed completely inappropriate psych drugs that can cause them iatrogenic harm and compound their problems. Sometimes the drug option may even be the first port of call. Despite what many doctors have been led to believe, the psychosomatic approach is not without considerable dangers.
I guess lawyers think alike. This is a letter I sent directly to Khullar on 10/2/21 with a CC: to the New Yorker mentioning that they fell down on the job in their editing process.
Dr. Khullar:
I am writing to you directly about your recent article on Long Covid with the hope you will take my comments to heart. I will copy The New Yorker as well.
It is clear that you are a compassionate person, struggling to understand a true conundrum. That said, I think your article was facile in many ways and reflects a dated and ill informed understanding of post-infectious disease.
To start, before I comment on your treatment of Berrent, let me say that I do not know Berrent and did not hear of her before your article. My first complaint is that you treat Diana Berrent and her most fervent supporters/followers as the spokesperson/people for all those suffering from Long Covid. I think that is presumptuous and speculative. Further, some of your criticisms of her…and the conclusions you draw – seem unwarranted and exaggerated. Assuming for the sake of argument (and I actually agree with you here) that some of the ailments she views as symptomatic of Long Covid are far fetched, you use that as a reason to dismiss commonly accepted Long Covid symptoms and imply primarily psychogenic causation. You also ignore that some of her critiques, like CDC’s decision not to investigate non-severe Long Covid cases, were also voiced by many medical/public health professionals. Similarly, you criticize her for her view of “mild” Covid cases. Yes, she is wrong to say that there are no mild cases. But it’s also true that the public – having no reason to know better – interpreted “mild” in the dictionary sense – whereas the medical establishment considers “mild” anything that is not severe, i.e, resulting in hospitalization or death. Medical “mild” can still make one quite ill. Further, even asymptomatic and layperson’s “mild” cases cause Long Covid.
You seem dismissive of the validity of a “syndrome” or illness until research has established the cause or found a diagnostic test. Surely you know that serious illnesses such as MS and ulcers were once considered to be psychogenic in origin. And that post-infection sequelae have followed many past viral outbreaks. Instead, you choose to highlight Jeremy Devine’s view that Long Covid “is largely an invention of vocal patient activist groups” rather than talking to Long Covid experts/researchers. This is reminiscent of those who dismissed ME/CFS* as psychogenic. You don’t seem prepared to acknowledge that people can have diseases such as chronic – fatigue syndrome, merely referring to “people who say they suffer from chronic – fatigue syndrome….. Have you read the 2015 National Institute of Medicine Report on chronic fatigue syndrome or looked at the CDC/NIH websites on the disease? You characterize such diseases by saying “some researchers consider [them] ill-defined,” in a way that dismisses them rather than reflecting years of research neglect. Fortunately, there has been a lot of progress recently. Here’s just one article that was recently published in PNAS, both about ME/CFS and Long Covid. https://www.pnas.org/content/118/34/e2024358118
Try talking to Avindra Nath, M.D, the Clinical Director of NINDS, the Director of the Translational Neuroscience Center and Chief of the Section of Infections of the Nervous System, who is leading research on ME/CFS and Long Covid. Or Cornell’s own Mauren Hanson, Director for the Center for Enervating Neuroimmune Disease. Or Ian Lipkin at Columbia. I doubt any of them would say Long Covid “lives for the moment in the realm of theory and anecdote.” Your choice of interviewees was unbalanced.
You might have deduced that I am writing with some connection to Long Covid. Luckily, I have not had Covid. But I have had ME/CFS for 21 years. Consequently, I am all too aware of the medical establishment not having taken ME/CFS seriously. The ME/CFS community is, in fact, very distrusting of the medical community because patients often have not been treated with respect or understanding and research into diagnosis, causation, and treatment was at a standstill for decades. Thankfully, there has been a major turn around in scientific understanding in recent years. But, based on the ME/CFS experience, I fear the views that you stated or implied about Long Covid, and the leaps you took in reaching conclusions, pose a greater problem than what some Long Covid advocates may have gotten wrong. I feel that you knew what you wanted to say and cherry picked to support your conclusions. Please do your homework next time.
Respectfully,
I believe long covid is a pathological fibrotic disease because I’ve had long covid since May 2020 as a fit male with A+ blood and everything I’ve done and not done indirectly tells me that it’s a pathological fibrotic disease. There’s many factors that promote fibrosis and inhibit fibrinolysis and autophagy. Stress(Cortisol) from doctors and peers that don’t believe us and keep stressing us out, excess sodium, excess calories/carbs, air pollution, technology use, sympathetic nervous system activation, low testosterone, growth hormone deficiency, lack of basic physical activity such as walking and I’m sure other factors that I’m forgetting that promote fibrosis.
I believe a lot of doctors don’t believe long covid is real because they are “healthy” people with either blood type B or O which indicates innate immunity against SARS viruses with their Anti-A isoantibodies that protect their organs from the hypercoagulatory effects of SARS viruses. They don’t experience the real symptoms of a SARS viral infection such as dry cough, heart issues, nervous system damage, etc…
Everyone I’ve known with blood type O is sufficiently healthy and had no symptoms or had symptoms of immediate viral clearance such as diarrhea, throwing up and sneezing. No dry cough. My 90 year old grandma with O- blood had zero symptoms other than feeling tired occasionally.
I believe we need education on blood types and innate immunity in healthy people with sufficient Vitamin A and D. So the covid deniers with innate immunity can be made aware of their innate immunity.
Thank you G for the PNAS link. Sweet as a nut. I take ‘mitochondrial fragmentation’ as a metaphor for what has been happening to women’s bodies in recent generations. The implication for future generations is disturbing.
I couldn’t agree more! Syndrome is seen mainly as a physiological disease in this special COVID-19 time.