What is POTS? This strange disorder has doubled since the pandemic

Sly Saint · Oct 3, 2023

In late 2021, after 18 months of long COVID symptoms, Oonagh Cousins, a member of Great Britain rowing team, was ready to resume training. She’d contracted COVID-19 in early 2020, and although her initial case was mild, Cousins spent the next year and a half experiencing a fatigue that went far beyond just feeling tired. “It was like a deep sickness,” she says, a “sludgy, deep weakness” that flared up after even mild exertion.

After that lengthy recovery period, Cousins’ only remaining symptom was a very mild case of postural orthostatic tachycardia syndrome—POTS—which is a type of dysautonomia characterized by an abnormal rise in heart rate after changing position, like sitting to standing. Patients with POTS report a variety of symptoms, including dizziness, fatigue, brain fog, and gastrointestinal disturbances.

Cousins is among millions of people living with POTS, a number that is estimated to have doubled since the beginning of the pandemic. Some of the known triggers include pregnancy, surgery, or a viral illness, such as COVID-19. A subset of these POTS patients also has a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is characterized by post-exertional malaise (PEM)—a situation in which symptoms worsen after exercise.

For patients with PEM, pushing past their physical limits—often encouraged in POTS recovery exercise protocols—can lead to major crashes. As a result, many patients with POTS and ME/CFS report being given inappropriate guidance on exercise, the consequences of which can be severe.

“They don’t teach us about ME/CFS or POTS in medical school,” says Sujana Reddy, a resident physician at East Alabama Medical Center, who developed both conditions after a COVID-19 infection in 2020.
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Although exercise is considered to be a first-line treatment for POTS, in a survey of long COVID patients 89.5 percent of patients reported relapses after exertion, while other patients report difficulties with following some of the exercise protocols. As a result, the National Institute of Health and Care Excellence cautions against using graded exercise therapy for treating post-COVID fatigue. For POTS patients whose condition wasn’t triggered by a COVID-19 infection, exercise can be helpful, but as many have discovered, it’s not a cure, nor is it an effective first-line treatment. Still, many patients report being expected to prove that exercise alone is not enough to treat their symptoms, before their doctors will consider putting them on medication.
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However, just as with any medication, there are nuances to the benefits of exercise, whether it’s figuring out the right amount and intensity, or screening for conditions that are often associated with POTS, for which exercise may be contraindicated. For other conditions, such as ME/CFS, exercise can lead to debilitating crashes.
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A number of POTS patients, including many long COVID patients, also meet the criteria for ME/CFS, the hallmark symptom of which is post-exertional malaise. PEM is often characterized by a flu-like feeling, such as swollen lymph nodes, joint and muscle aches, and low-grade fevers that develop within hours and days following over-exertion.

“My world as a clinician is broken down into ‘Do you have post-exertional malaise or do you not have post-exertional malaise?’” says Todd Davenport, a physical therapy researcher at the University of the Pacific. “It’s a very important clinical decision point.”
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For Lindsay Levinson, a long COVID patient with POTS and ME/CFS, understanding her new limits on exertion has been a steep learning curve, one that goes against all her former instincts. “I’m good at pushing myself,” she says. At the recommendation of her doctors, Levinson tried resuming her spinning classes, which had been her favorite activity before getting sick. After a month of doing once-a-week classes at a gentle pace, she had a massive relapse, characterized by full-body pain, and an inability to complete simple chores, such as bathing or cooking dinner.
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https://www.nationalgeographic.com/premium/article/pots-exercise-harm-fatigue-long-covid

InitialConditions · Oct 3, 2023

Imagine being well enough to even attempt to get to a spinning session.

rvallee · Oct 3, 2023

Damn. There's bad, and then there's "90% worse outcome" level of bad. Not just useless, but actively harmful leading to worse outcomes than nothing at all. While they insist it's a complete cure and if you aren't better then it's your fault for lacking motivation, or having negative beliefs about blah-blah-blah. Only in medicine can you get away with BS like this. Literally only in medicine. In any other profession, you try this stuff and you get fired pretty quickly.

Hutan · Oct 3, 2023

Although exercise is considered to be a first-line treatment for POTS, in a survey of long COVID patients 89.5 percent of patients reported relapses after exertion, while other patients report difficulties with following some of the exercise protocols. As a result, the National Institute of Health and Care Excellence cautions against using graded exercise therapy for treating post-COVID fatigue.
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That reference is:

Characterizing long COVID in an international cohort: 7 months of symptoms and their impact
Davis et al
Note that that was a 2020 paper.

Forum thread here:Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact, 2020, Hannah Davis et al

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What is POTS? This strange disorder has doubled since the pandemic

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