The day Dr. Elizabeth Dawson was diagnosed with COVID-19, she awoke to feel that she had a bad hangover. Four months later, in February 2021, she tested negative for the virus, but her symptoms have only worsened.
Dawson is among what Dr. David Goldstein, head of the National Institutes of Health’s Autonomic Medicine Section, called “waves and waves” of “long-haul” COVID patients who remain sick long after testing negative for the virus. A significant percentage are suffering from syndromes that few doctors understand or treat, primarily postural orthostatic tachycardia syndrome (POTS) and chronic fatigue syndrome (CFS). In fact, a yearlong wait to see specialists for these syndromes was standard even before the ranks of patients were swelled by pandemic newcomers. For some, the consequences are life-altering.
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Before last fall, Dawson, 44, a dermatologist from Portland, Oregon, routinely saw 25 to 30 patients a day, cared for her 3-year-old daughter, and ran long distances. Today, her heart races when she tries to stand. She has severe headaches, constant nausea, and brain fog so extreme that, she says, it “feels like I have dementia.” Her fatigue is intense: “It’s as if all the energy has been sucked from my soul and my bones.” She can’t stand for more than 10 minutes without feeling dizzy.
Through her own research, Dawson recognized she had typical symptoms of POTS, a disorder of the autonomic nervous system, which controls involuntary functions such as heart rate, blood pressure, and vein contractions that assist blood flow. It’s a severe condition that sometimes overlaps with autoimmune problems, which involve the immune system attacking healthy cells. Before COVID-19, an estimated 3 million Americans had POTS.
Many of those patients report it took them years to find a diagnosis. With her own suspected diagnosis in hand, Dawson soon discovered there were no specialists in autonomic disorders in Portland—in fact, there are only 75 board-certified autonomic disorder doctors in the U.S. There are some specialists in other fields, however, who have studied and treat POTS and similar syndromes from different angles. The nonprofit organization Dysautonomia International provides a list of a handful of clinics and about 150 U.S. doctors who have been recommended by patients and agreed to be on the list.