Thread by @Dakota_150

Washington Post: "For long covid fatigue, a strategy called ‘pacing’ helps, but at a cost"

'Taking a lesson from people with chronic fatigue, many patients with long covid are scaling back daily activity to cope'

washingtonpost.com/wellness/2023/…

"Experts say the extreme fatigue experienced by many long covid patients has a name: myalgic encephalomyelitis (ME/CFS), a condition previously known as chronic fatigue syndrome. Researchers estimate that about half of people with long covid have developed ME/CFS."

"There is no known cure for ME/CFS, but some experts say a complicated lifestyle change can help manage some of the symptoms."

“I tell people to figure out what they can do every day without struggle,” explained Ravindra Ganesh, a physician & medical director of Mayo Clinic’s Post-COVID-19 Care Clinic.

People with long covid who have tried pacing say it has helped them return to a semblance of normalcy.

"While pacing is a new strategy for those with long covid, it’s been used for years by people who suffer from ME/CFS. The cause of ME/CFS is not understood. Experts believe the disease can be triggered by illness, infection or stress."

“Pacing is being active when you’re able, and resting when you’re tired, rather than pushing through symptoms,” said Jaime Seltzer, director of scientific and medical outreach at #MEAction, a nonprofit advocacy group for people with infection-associated chronic illness."

Both the Centers for Disease Control and Prevention and the British National Institute for Health and Care Excellence updated their guidance in the past decade to remove graded exercise therapy as a recommended treatment for ME/CFS.

"The post-exertional malaise she described is a defining quality of chronic fatigue. Even minor levels of activity can cause a worsening of symptoms, or “crash.”

"These tests, called cardiopulmonary exercise tests, have been performed on people with long covid as well, yielding similar results."

"The culprit seems to be a dysfunction in the body’s aerobic energy system, which is responsible for providing long-term energy to the body..

d relies heavily on blood flow to deliver oxygen, according to Todd Davenport, professor and vice-chair of the physical therapy program at the University of the Pacific, who has studied ME/CFS."

Often, by the time people learn about pacing, they are already caught in a boom and bust cycle, where they feel better, push themselves to do too much and crash again, said Seltzer. Sometimes a crash occurs 24 hours or longer after the triggering activity, she said.

H/T @exceedhergrasp1 @sunsopeningband @MEActNet