The day Dr. Elizabeth Dawson was diagnosed with COVID-19 in October, she awoke feeling as if she had a bad hangover. Four months later she tested negative for the virus, but her symptoms have only worsened.
Dawson is among what one doctor called "waves and waves" of "long-haul" COVID patients who remain sick long after retesting negative for the virus. A significant percentage are suffering from syndromes that few doctors understand or treat. In fact, a yearlong wait to see a specialist for these syndromes was common even before the ranks of patients were swelled by post-COVID newcomers. For some, the consequences are life altering.
Before 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 said, it "feels like I have dementia." Her fatigue is severe: "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 postural orthostatic tachycardia syndrome, or POTS. It is 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 is a serious condition — not merely feeling lightheaded on rising suddenly, which affects many patients who have been confined to bed a long time with illnesses like COVID as their nervous system readjusts to greater activity. POTS sometimes overlaps with autoimmune problems, which involve the immune system attacking healthy cells. Before COVID, an estimated 3 million Americans had POTS.
Many POTS patients report it took them years to even 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.
Other doctors, however, have studied and treat POTS and similar syndromes. The non-profit 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.
In January, Dawson called a neurologist at a Portland medical centre where her father had worked and was given an appointment for September. She then called Stanford University Medical Centres autonomic clinic in California, and again was offered an appointment nine months later.
Using contacts in the medical community, Dawson wrangled an appointment with the Portland neurologist within a week and was diagnosed with POTS and chronic fatigue syndrome (CFS). The two syndromes have overlapping symptoms, often including severe fatigue.
Dr. Peter Rowe of Johns Hopkins in Baltimore, a prominent researcher who has treated POTS and CFS patients for 25 years, said every doctor with expertise in POTS is seeing long-haul COVID patients with POTS, and every long-COVID patient he has seen with CFS also had POTS. He expects the lack of medical treatment to worsen.
"Decades of neglect of POTS and CFS have set us up to fail miserably," said Rowe, one of the authors of a recent paper on CFS triggered by COVID.
The prevalence of POTS was documented in an international survey of 3,762 long-COVID patients, leading researchers to conclude that all COVID patients who have rapid heartbeat, dizziness, brain fog or fatigue "should be screened for POTS."
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