I don't think this has been shared yet. It was published four days ago.
Wired
To Help People With Long Covid, Scientists Need to Define It
quotes:
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 are—and then dismissed by medicine as imagined. Lyme disease is one such example; myalgic encephalomyelitis/chronic fatigue syndrome, another. Researchers are determined that long Covid not 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,” says Megan Ranney, a physician and associate dean at the Brown School of Public Health and co-director of a new long Covid initiative there.
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One challenge of defining long Covid is persuading patients that trauma may be playing a role in their symptoms—without appearing to tell them that it is all in their heads. Researchers are at pains to affirm to patients that while they are authentically ill, the cause of their illness may not be what they believe it to be.
This is hard. Diagnoses are validating; they put a frame of meaning around the chaos of illness. A diagnosis of long Covid in particular might give someone bewildered by strange symptoms a sense of purpose, a chance to identify with the patients’ collaboratives who are sharing information and reassurance as a means of turning their suffering to good. Scientists wrestling with definitions for the syndrome worry about taking that emotional support away. “The entire conversation about whether or not long Covid is real is predicated on this assumption that something physiologic is real, and something psychiatric is not real,” says Daniela J. Lamas, a critical care physician and assistant professor at Harvard Medical School who co-directs the Covid Recovery Center at Brigham & Women’s Hospital. “And that's not accurate. There's a tremendous amount of suffering in these patients.”
Scientists need to narrow the definition of long Covid in order to be able to research it—and conflating the physical impact of the virus with the after-effects of trauma could slow the search for remedies. But at the same time, acknowledging that some portion of the syndrome may arise not from a single infection but from shared grief could allow us to reframe, and name, the greater harms the pandemic has wrought.
