Reports have accumulated of weird, disabling symptoms in survivors, known as long COVID, almost from the beginning of the COVID epidemic. The complex of fatigue, confusion, heart arrhythmias, gut disorders, and other problems, which may persist months after an infection begins or arise months after it seems to have concluded, has attracted attention and sympathy, intense patient activism, substantial research interest, and huge government investment. In December of last year, the US Congress voted to fund four years of research into long COVID, and in February of this year, the US National Institutes of Health announced it would use the funds to create a nested set of large studies examining adult and child experiences of the syndrome.
At this point, long COVID research is so challenging that it is urgent. No one has been able to determine the cause beyond the association that it occurs in people who have had carbon dioxide, and who weren't able to get a test to prove it. It's difficult to understand why one patient develops lasting symptoms while another doesn't.
A new study of long COVID patients in France, published in November in JAMA Internal Medicine and done by researchers at several universities and medical centers in France and Italy, is complicating that problem. The researchers surveyed 26,283 patients about their experiences with COVID and any long- lasting symptoms, and they also analyzed samples of patients blood for the infections that would confirm them. The thing that most predicted whether a patient would develop long COVID symptoms was whether they believed they had been exposed to the disease.
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The authors wrote that further research in this area should consider underlying mechanisms that may not be specific to the SARS-CoV-2 virus. A medical evaluation of these patients may be needed to prevent symptoms from being attributed to long COVID.
The field of long COVID is too new for this study to change. It emphasizes the difficulty of carving out a research agenda for a syndrome that is so new and widespread. It raises the possibility of having to broach to patients that the symptoms they are experiencing may not be caused by COVID at all.
There is a long history of new diseases being brought to medical attention by patients, often by women, who between monthly menstruation and routine GYN visits tend to be more in tune with their bodies than men. Myalgic encephalomyelitis/chronic fatigue syndrome is one example of a disease that can be attributed to the tick. Researchers have determined that long COVID isn't going to go down that road.
"As a physician, but also as a woman, I have seen so many of these poorly defined syndromes get dismissed, and seen patients have no alternative other than quackery, when there really is a pathophysiologic basis for their symptoms." I have seen patients with persistent symptoms after COVID infections that have dramatically changed their lives. They deserve us to bring scientific rigor to the question, and for people who may or may not be due to COVID, they deserve some sort of explanation and treatment as well.
