To help people with long Covid, scientists must define it

Almost of the start of the Covid pandemic, reports have piled up of persistent, strange and debilitating symptoms in survivors, a syndrome that has come to be known as long covid. The complex of fatigue, confusion, heart arrhythmias, bowel disturbances, and other issues – which can linger for months after an infection begins or occur months after it seems to have ended – attracted attention and sympathy, intense patient activism, substantial interest in research, and huge public investment. Last December, the United States Congress voted $ 1.15 billion to fund four years of research into the long Covid, and in February, the The United States National Institutes of Health announced he would use these funds to create a nested set of large studies examine the experiences of adults and children with the syndrome.

What makes long Covid research urgent is also what makes it, at this point, so difficult. No one has yet been able to determine its cause, beyond the association that it occurs in people who have had Covid – or who believe they have but could not get tested for prove it. It is therefore difficult to understand and therefore predict who is vulnerable: why one patient develops lasting symptoms and another does not.

A new study of long Covid patients in France, published in November in JAMA Internal Medicine and carried out by researchers from several universities and medical centers in France and Italy, complicates this problem. The researchers asked 26,283 patients about their experiences with Covid and any long-lasting symptoms, and also analyzed their blood samples to look for antibodies that would confirm their infections. Their findings: The thing that most predicted whether patients developed long symptoms of Covid was whether they thought they had been infected, not whether their infection could be confirmed in the lab.

“Further research in this area should take into account the underlying mechanisms which may not be specific to the SARS-CoV-2 virus,” the authors wrote. “A medical evaluation of these patients may be needed to prevent symptoms due to another illness wrongly attributed to ‘long COVID’. “

This study did not disrupt long-term Covid research: the field is too new for that. But for scientists working on the problem, it underscores the difficulty of carving out a research agenda for such a new, multifaceted and widespread syndrome. And it raises the troubling prospect of having to explain to patients, without being dismissive, that the symptoms they experience may not be caused by Covid at all.

There is a long history of new illnesses brought to the attention of physicians by patients – often by women, who between monthly periods and routine gynecologist visits tend to be more in tune with their bodies than men. are not – then rejected by medicine as we imagine. Lyme disease is one example; myalgic encephalomyelitis / chronic fatigue syndrome, another. Researchers are determined that Covid will not follow this path for a long time.

“As a doctor, but also as a woman, I have seen so many of these ill-defined syndromes being rejected, and I have seen patients with no other alternative than quackery, when there is really a pathophysiological basis for their symptoms, ”says Megan Ranney, physician and associate dean at the Brown School of Public Health and co-director of a new long-running Covid initiative there. “As an emergency physician, I have seen, first-hand, patients with persistent symptoms after Covid infection who have drastically changed their lives. They deserve that we bring scientific rigor to the matter – and for people for whom some of these symptoms may exist and not be due to Covid, they also deserve some sort of explanation and treatment. “

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