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Long Covid is Pitting Patients Against Doctors. That’s A Problem.

0 3 years ago

AS OF THIS MONTH, nearly 250 million people around the world have recovered from Covid-19. But here, the word “recovered” refers only to the acute phase of the illness. Somewhere between 10 and 40 percent of Covid patients continue to experience symptoms several weeks to months after falling sick, a nebulous condition now referred to as post-Covid condition, or long Covid.

In long Covid, we are witnessing the emergence of a legitimate new illness, officially recognized by the World Health Organization’s International Classification of Diseases. Because it is difficult to diagnose and treat, however, long Covid has also become a subject of contention between the people who suffer from it and the health care professionals charged with treating them. Long Covid patients have described feeling dismissed and “gaslit” by doctors who seem to question their illness — or who seem at a loss for what to do about it.

Understandably, then, many long Covid sufferers have turned to patient and advocacy support groups for solutions. As physicians ourselves, we know that patient groups can provide needed social and emotional support, especially to patients who feel alienated and unheard by medical professionals. But we also know they can be cauldrons of misinformation — and feeding grounds for snake-oil salesmen hawking unproven treatments. And so it’s critical that patients and health care professionals find ways to work with, rather than against, each other in the effort to find solutions for long Covid. Otherwise, the problem is destined go from bad to worse.

The task is made difficult by the fact that we know so little about long Covid. Although the condition is frequently marked by symptoms including fatigue, headaches, muscle pain, and “brain-fog,” laboratory tests and physical examinations of long Covid patients may show nothing out of the ordinary. As a result, long Covid has drawn comparisons with so-called contested illnesses, such as myalgic encephalomyelitis (also known as chronic fatigue syndrome) and fibromyalgia, whose legitimacy are questioned by the medical profession. There is even some evidence that some cases of long Covid may be caused by something other than Covid-19. A recent study found that patients who believed they’d been infected with Covid-19 — but hadn’t confirmed that status with testing — tended to report more symptoms of long Covid than patients who were confirmed with blood tests to have actually had Covid-19.

Collectively, this doubt and ambiguity has contributed to a potentially adversarial relationship between doctors and patients. Headlines like the one for a recent story in The Atlantic, “Long-Haulers Are Fighting for Their Future,” have only contributed to the combative tone.

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