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Covid long-hauler physicians reject their peers’ party line that their symptoms are psychosomatic
Glasgow palliative care physician Shaun Peter Qureshi came down with Covid-19 early in the pandemic. Like many patients, he experienced profound fatigue, episodes of dizziness, and problems with memory and concentration for many months after his acute illness. Standard medical tests were all negative.
His doctor refused to order more tests, citing concerns about “over-investigating” his condition, he said. “She doesn’t think there was anything really wrong,” said Qureshi, who is 35 and remains severely disabled. Other doctors suggested he just needed exercise to get back into shape after having been sick.
Asad Khan, a pulmonologist in Manchester, England, has not been able to work more than a year out from his bout of Covid. Like Qureshi, he has found that other physicians have pooh-poohed his exhaustion and other symptoms. “I’ve been told, ‘It’s nothing serious,’” said Khan, who is 46. “I’ve also been told, ‘Do you think you’re stressed? Do you think you’re over-perceiving your symptoms?’’’
Given persistent shortages in protective gear, medical professionals in the U.K., U.S. and elsewhere have been hard-hit by Covid — and by long Covid, the disabling condition that can follow. Many have been shocked that their own clinicians and colleagues have dismissed or expressed disbelief about their continuing symptoms.
They are also angry that members of their profession are publicly hyping and researching the notion that long Covid is mainly generated by pandemic-related emotional and psychological distress.
Last April, in a Wall Street Journal opinion piece called “The Dubious Origins of Long Covid,” Jeremy Devine, a psychiatry resident at McMaster University in Hamilton, Canada, called it “largely an invention of vocal patient activist groups” — a reference to advocates like the members of Body Politic, an online support group that drew early public attention to the issue with a self-published survey.
News and social media accounts of long Covid were enabling “patient denial of mental illness,” Devine wrote, and a decision by the U.S. National Institutes of Health to appropriate more than $1 billion to pursue the issue was “a victory for pseudoscience.” (Devine did not respond to requests for comment sent to his Twitter account and the McMaster University psychiatry department).
In the Netherlands, University of Amsterdam investigators are testing whether a course of psychotherapy designed to counter “fears and worries about COVID-19,” “dysfunctional beliefs about fatigue,” “problems with processing the acute phase of COVID-19,” and “perceived low social support” can prevent the severe fatigue reported in long Covid. The intervention is based on the presumption that these factors, among others, are perpetuating the symptoms, despite a shortage of evidence supporting the notion.
Research in this vein is “sewage” and “bonkers,” said Khan, the Manchester pulmonologist, who has at times been bed-bound for weeks, with extreme sensitivity to light, sound, and touch. He is currently in Germany undergoing apheresis, a treatment designed to clear the blood of what are called micro-clots, which some experts believe are implicated in long Covid.
“It is clear to me that medicine has fallen into a pattern where the jump to ‘this is psychological’ is instant,” he said. “Something is very wrong with the way we are dealing with illnesses where there isn’t a clear biomarker or clear abnormality on examination.” Khan is a member of a private Facebook group of more than 1,400 doctors who either have long Covid themselves or want to learn more about it.
The effort to explain away these symptoms as psychosomatic is “rubbish” and demonstrates medicine’s blind spots, agreed Qureshi. His own physical deterioration should have triggered extensive investigations into possible organic factors, he said. Instead, he felt shunted aside by the health care system and had to move in with his parents when living alone became too challenging.
“I was a 33-year-old who has gone from being completely independent, high functioning, working as a doctor, to not being able to think clearly, not being able to do anything for themselves,” said Qureshi. The medical neglect, he added, “really opened up my eyes.”
In contrast to the long Covid skeptics, a commentary last summer in the New England Journal of Medicine called the phenomenon “our next national health disaster.” The commentary rejected claims that long Covid represented a mental illness and estimated that the U.S. could see more than 15 million cases. And that was before the omicron variant wave.
Given how medicine generally treats people with poorly understood symptoms, the commentary noted, long Covid patients could face tough going in the health care system. “If the past is any guide, they will be disbelieved, marginalized, and shunned by many members of the medical community,” warned the commentary, written by Steven Phillips, a physician and vice president of the Covid Collaborative in Washington, D.C., and Michelle Williams, an epidemiologist and the dean of Harvard’s T.H. Chan School of Public Health.
As Phillips and Williams pointed out, medicine has often stumbled when dealing with people suffering from physical complaints without an easily identifiable organic cause. In the medical literature, this category is frequently called “medically unexplained symptoms” or “persistent physical symptoms” and includes conditions that cannot be diagnosed through standard biological tests, like irritable bowel syndrome and myalgic encephalomyelitis, also known as chronic fatigue syndrome, or ME/CFS.
Unfortunately, most clinicians are not House. When routine examinations fail to yield results, physicians often conclude that patients are “somatizing”— expressing psychological distress in the form of physical sensations. Patients who reject this psychosomatic view can be dogged about seeking further medical consultations and tests despite having been advised repeatedly that nothing amiss has been found.
Doctors often refer to this persistent group as “heartsink” patients. Medical journals regularly publish articles that acknowledge clinicians’ frustrations in dealing with them and provide tips on how to gently recommend that they could benefit from some psychotherapy. Doctors with long Covid now find themselves subjected to this sort of treatment from their peers.
The emergence of long Covid should not have been surprising. In some cases, natural recovery from a serious viral infection can take many months, even a year or longer. That means many if not most of those continuing to report symptoms are likely to improve over time.
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But it is also well-known that viral illness can leave a subset of survivors with years of ongoing medical complaints, said Mady Hornig, an epidemiologist at Columbia University who is also a psychiatrist. Many if not most ME/CFS patients report that their illness began, like long Covid, with a viral infection that never seemed to fully resolve.
Hornig, who has long Covid herself, recalled that one of her doctors suggested she should “start thinking about the sources of the anxiety” that were “obviously” driving her debilitating exhaustion and other symptoms. Hornig immediately rejected the explanation. “I said, ‘It’s probably true I have some anxiety worthy of further dissection, but I don’t think this is an example of that,’” said Hornig, who studies ME/CFS and is now involved in long Covid research as well.
Besides shortness of breath, profound fatigue, and cognitive problems collectively called “brain fog,” long Covid patients often suffer extended relapses even after minimal activity, known as “post-exertional malaise.” Many also suffer dizziness linked to a condition called POTS, in which standing up causes sharp heart rate increases.
In some cases, prolonged symptoms can be attributed to detectable damage to the lungs, hearts or other organs, or to having spent time in an intensive care unit, which is known to have negative effects. But many long Covid patients experienced mild cases of acute illness, were not hospitalized, and have no readily identifiable organ complications.
Estimates of how many Covid patients report continuing symptoms range from a few percent to a third and higher, depending on factors like how the syndrome is defined, which symptoms are included, and the population sampled. Research into the biology and treatments remains in its early stages. Scientists believe long Covid could be linked to a weakened or malfunctioning immune system, auto-antibodies that attack host cells, micro-clots in the blood, inflammation in the central nervous system, or a combination of these and other factors.
Those who argue that long Covid symptoms are predominantly psychosomatic often cite other unexplained conditions as precedent — and in particular ME/CFS.
Some key symptoms of ME/CFS, such as post-exertional malaise and cognitive dysfunction, are also common in long Covid, and some long Covid patients are now receiving an ME/CFS diagnosis.
For decades, mainstream medicine regarded ME/CFS patients as suffering from an erroneous conviction of having an ongoing disease coupled with muscle loss from too little activity. Depression and related mental health issues were also often assumed to be a factor. The standard treatments were either a program of gradually increasing activity or a course of psychotherapy designed to alleviate patients’ “unhelpful” or “abnormal” beliefs of having a disease. Many patients, however, reported that pushing themselves to do more triggered serious relapses and led to greater physical and mental deterioration.
In recent years, the traditional treatment approach has lost credibility because of growing awareness of serious lapses in the research cited to support it. The U.S. Centers for Disease Control and Prevention dropped the recommendations a few years ago. Last fall, Britain’s National Institute for Health and Care Excellence recommended against these purportedly curative treatments in new ME/CFS clinical guidelines, rating evidence for their effectiveness as “very low” or in some cases merely “low.”
Despite this shift, some of the physicians who have promoted psychological and behavioral treatments for ME/CFS are among those pushing the same approach for long Covid. This group’s continued adherence to psychological explanations for post-viral medical complaints does not surprise Johns Hopkins pediatrician Peter Rowe, an ME/CFS and POTS expert who has treated long Covid patients.
“These guys are so married to this broken hypothesis that no amount of factual information or scientific data will make them change their view,” said Rowe. “That’s theology, that’s not science.”
Nina Muirhead, a dermatological surgeon with ME/CFS in Buckinghamshire, England, said she empathizes with the doctors with long Covid confronting doubt and dismissal from their clinicians and colleagues. She recalled facing similar reactions from her peers when she was diagnosed with ME/CFS several years ago, after a bout of glandular fever from which she never seemed to recover. At times, Muirhead was too sick to take care of her kids or even watch TV, much less practice medicine. She has since improved enough to be able to work a reduced schedule.
Before Muirhead got sick, she believed what she’d been taught about ME/CFS during her medical training — that it was driven by depression, anxiety and other mental health issues, and that patients just needed exercise and psychotherapy. She only questioned that conviction as she struggled to come to grips with her situation.
“I thought to myself, ‘Either I have a rare and serious disease which is not ME or I do have ME and the majority of the medical profession has completely misunderstood this medical condition,’” said Muirhead. When she concluded it was the latter, she said, she felt “shock and horror at the enormity of the error of considering this disease as psychologically driven.” Muirhead has advocated for improved medical education about ME and is director of Doctors with ME, a professional association that has advised some of their counterparts with long Covid.
Those arguing that long Covid is largely psychological build their case on the indisputable fact that it can be difficult to determine the source of non-specific symptoms like fatigue and problems with memory and concentration. In a recent article, Adam Gaffney, a Boston pulmonologist and critical care doctor, noted that symptoms are “common in the general population” and suggested that this phenomenon “complicates interpretation of much long Covid literature because misattribution of the cause of symptoms, by both physicians and patients, is also common.”
Gaffney, who is also an assistant professor at Harvard Medical School, has proposed “psychosocial strain” — distress arising from the impact of social factors — as central to the reports of exhaustion, relapses, and cognitive impairment. But there is little convincing evidence to support the argument that the worldwide long Covid phenomenon is largely due to psychosocial strain, depression and anxiety.
At the start of the pandemic, testing was scarce and doctors advised many patients to stay home unless they needed medical care. As a result, many early long Covid patients had no laboratory evidence of having had Covid — a lack of proof that has made it easier for Devine, Gaffney and others to suggest their reported symptoms were unrelated to coronavirus infection.
More recently, some high-profile studies have found that people who were negative on coronavirus antibody tests reported similar long Covid symptoms to those who were positive for antibodies. Gaffney and others have cited these studies to suggest that the long Covid wave is generated by virus-related fears and not by organic disease. But antibody tests can be inaccurate, producing both false positives and false negatives. They can fail to detect prior infections if someone’s antibody levels have waned or they did not produce substantial amounts in the first place.
Moreover, if people with weaker immune responses to coronavirus infection are more likely than others to develop long Covid, then it would not be particularly surprising for these patients to test negative on antibody tests taken at some later point. Gaffney declined to respond to questions about his views on long Covid.
Some doctors with long Covid have refused to accept the situation quietly. In September of 2020, BMJ (formerly the British Medical Journal) published a letter titled “From doctors as patients: a manifesto for tackling persisting symptoms of covid-19.” Signed by more than three dozen physicians, many with positions at prestigious British universities, it specifically cited the need for biomedical research.
Like Columbia’s Mady Hornig, other physicians with long Covid have also become deeply involved with research into the disorder. Despite limited energy, Asad Khan is collaborating on a number of projects in both the U.S. and Europe, including a study of apheresis, the treatment he is currently undergoing. He also maintains an active presence on social media, castigating problematic long Covid research on Twitter as “nonsense” and “unethical” and appearing in webinars about the issue.
“My role is to raise awareness of the biomedical nature of these illnesses using my privilege as a physician patient,” said Khan.
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David Tuller is a senior fellow in public health and journalism at the Center for Global Public Health at the University of California, Berkeley. His position is supported through university-sponsored crowdfunding campaigns to which ME/CFS patients and advocates have donated.
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