The New Yorker’s Irresponsible Coverage of Long COVID

Graphic by Alecia Smith

A recent article in The New Yorker on Long COVID portrays Long COVID patients and skeptics as “squaring off,” and has received substantial criticism from Long COVID patients and advocates, journalists and clinicians covering and treating the disease, and many in the larger disability and chronic illness advocacy space. The article was criticized for its treatment of mental health and suicide, its portrayal of Long COVID skeptics as a substantial part of the biomedical community, its failure to include any patient voices, and its ethical issues regarding conflicts of interest.

Earlier this month, The New Yorker published three letters in response to the controversial article, which can be viewed here. However, many more letters were written. 

Below are some of the letters Body Politic members submitted to The New Yorker that were not published.

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By my count, Dhruv Khullar's essay in the September 20 edition, "The Struggle to Define Long COVID," runs for just over 1,600 words. Most of those words are used to frame thoughts that are insightful and reflective. Three of those words, however, are concerning, as is the inference that Dr. Khullar advanced with those words. Those three words: "Dogma obscures data."

Obviously, in this case, "dogma" is chosen deliberately to be derogatory. It seems to be inspired by the unwavering confidence and the certainty conveyed by the particular patient advocate he interviewed for the article, a level of veracity that, for the statements Dr. Khullar chose to include in his essay, departs from the current state of the science. In this case, a form of dogma was undoubtedly dominant – and it led to a departure from data, evidence, and facts.

Of course, I can only speculate about Dr. Khullar's motivation for his word choice. But there's no speculation in what I know of the Long COVID community and its advocates. I've lived with Long COVID's debilitating symptoms for over 18 months (and counting). Yes, all of us have days when we are so frustrated that we get dogmatic, but those days are not the rule. Dr. Khullar could have easily found any number of us who much prefer data over dogma and facts over fanaticism. It's too bad he couldn't find room in his 1,600 words to reach us.

Sincerely,

Michael Sieverts, Long COVID patient 

Arlington, VA

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Having already expressed concerns to you about this story, and then seeing a complete lack of response by Dr. Khullar on social media, where he maintains a presence, I feel compelled to write once more to underline that this story falls short of the New Yorker's usual standards.

There is an international effort among scientists to identify the causes of Long COVID and find possible treatments. Emerging experts in this field include virologists, infectious disease specialists, and relevant fields affiliated with Yale, Harvard, and other leading institutions. Dr. Khullar omitted any reference to these efforts. Current efforts also include patient-led research to provide data about Long COVID symptoms. For example, Ed Yong's reporting for The Atlantic has covered these efforts thoroughly. Why has Dr. Khullar not referenced any of these efforts?

The New Yorker has built a reputation for excellence – for creating its own uniquely high standards – in long-form scientific reporting. 

Ongoing research is narrowing in on hypotheses to explain what causes Long COVID. (A leading hypothesis is that SARS-CoV-2 persists in some patients, either in its entirety or as the spike protein antigen, and that this viral matter evokes ongoing immune dysregulation and inflammation within the blood vessels and in other parts of the body rich in ACE-2 receptors, which the virus uses to access cells). Why the virus persists, and why some people have more trouble than others clearing the virus out of their system, are ongoing questions. Researchers are investigating possible treatments via existing medications as a much-needed first step.

Obviously, those of us who know firsthand how debilitating COVID can be, and how many people are being impacted, want to see attention that is constructive, curious, and genuinely useful to sick people. 

I'm very concerned that Dr. Khullar's uninformed reporting under the influential and widely respected aegis of The New Yorker may influence doctors not to stay curious or do the work to gain expertise in this new terrain. People sick with a new illness, whose signs may be easily dismissed as noise rather than signal because they are unfamiliar, are very vulnerable to being dismissed as hypochondriacs. I would greatly appreciate some meaningful follow-up to address any such confusion created by this damagingly uninformed cover story.

Thank you so much for hearing my concern.

Sincerely,

Carol Poole, MA LMHC, Long COVID patient

Seattle, WA  

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As a long time reader of The New Yorker, I am reaching out to provide feedback for the first time. 

I have been suffering with Long COVID for over a year and found Dhruv Khullar’s “Defining Long COVID” deeply disappointing and misleading.

I understand the decision to interview Diana Berrent, as the leader of a prominent Long COVID patient group. However, it was a mistake to generalize her lack of scientific rigor to the patient population at large. Many individuals in the Long COVID community pay close attention to scientific literature – searching for evidence that can lessen their suffering. Some, like me, have scientific backgrounds and are using our skills to add to the scientific literature on Long COVID.

It would have strengthened the article to interview a broader array of individuals who have experienced Long COVID, such as the leaders of Body Politic, which runs another prominent COVID-19 support group, and/or their research partner, the Patient Led Research Collaborative (PLRC) – who, like me, have scientific backgrounds. They could have provided a more balanced view of the Long COVID patient experience and demonstrated the scientific rigor with which PLRC approaches patient-led Long COVID research.

They could have clarified that, contrary to Berrent’s statements, many COVID-19 cases are asymptomatic, and a case resulting in end-stage organ failure would be quite unlikely to be classified as mild. They could have educated the author on why many individuals without positive diagnostic or antibody test results believe they have Long COVID. PLRC’s peer-reviewed research, based on the experiences of 3,762 individuals, has shown that symptom patterns and disease progression is similar between those with both confirmed and suspected cases. Additional research has shown that lower SARS-CoV-2 IgG antibody levels are associated with higher risk of developing long-term symptoms.

Many in the patient community are concerned about the damage this article has done to our efforts to have our debilitating symptoms taken seriously. We are saddened to see The New Yorker contributing to the pattern of dismissing patients’ knowledge of their own bodies, as has happened for years to the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Postural Orthostatic Tachycardia Syndrome (as discussed in the article), and other patient communities. I hope you will consider updating the current article and/or creating a follow up piece that provides a more holistic view of Long COVID.

Julia Moore Vogel, Long COVID patient-researcher

Southern California

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Dhruv Khullar’s story on Long COVID frames a debate between two sides – patients uneducated in science “square off” against skeptical doctors who doubt the origin of Long COVID. However, the debate Khullar describes does not accurately represent the relationship between the patient-led Long COVID movement and the biomedical community. Khullar highlights one Long COVID leader, a non-patient, “citizen-scientist” who says she hasn’t “taken biology since 10th grade.” While a deep knowledge of science and medicine is not necessary for patient advocacy, Khullar frames the patient movement as entirely unrooted in science, ignoring the many Long COVID patient leaders who are doctors and scientists, (notably the Patient-Led Research Collaborative who were cited by the NIH for their work). 

 Khullar interviews nearly every outspoken Long COVID “skeptic” – most of whom have no direct experience with post-infectious diseases (and one of whom is funded by the same venture capital firm as Khullar) – but none of the many researchers studying this condition and related illnesses. Long COVD “skeptics” exist, but they are a minority in the biomedical community. Instead, Khullar depicts “skeptics” as the primary group interfacing with patients.

Khullar’s failure to include a single Long COVID patient’s voice hinders the article’s claims about patients (“nothing about us without us,” as justice advocates have long said). His approach is not new, and neither are post-infectious illnesses. Patients with ME/CFS were long misunderstood and maligned by clinicians and journalists who viewed the disease as psychological. While the CDC and WHO now recognize ME/CFS as having a biomedical origin, outdated approaches continue to harm patients. 

 Articles like Khullar’s risk doing the same for Long COVID. 

Fiona Lowenstein, Journalist and Long COVID survivor

New York, NY