USA: Long Covid clinics - general discussion

[Art Vandelay]

A long article with a good focus on ME/CFS and interviews Lucinda Bateman and Jaime Seltzer:

What patients find at long COVID clinics: rejection, outdated therapies, and unanswered questions
Roughly 16 million Americans are living with long COVID, but many are not getting the right medical care. One way to improve the system is by letting patients lead.

Sara, a 30 year-old who wished to omit her last name, says that in the fall of 2021, when she had a virtual appointment with MedStar Health COVID Recovery Program in Maryland, her doctor told her that her symptoms were due to untreated anxiety and depression—a common experience for patients with chronic illness, particularly women and people of color. She worked with a lawyer to attempt to get the psychosomatic note off her record because she said it might put the private long-term disability insurance that she was applying for in jeopardy.
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Because so many physicians are uninformed about ME, some at long COVID clinics prescribe therapies that have been proven to be harmful to patients who experience post-exertional malaise (PEM). Graded exercise therapy (GET)—a controversial form of physical therapy for ME and long COVID which slowly increases exercise over time— worsens patients’ symptoms who experience PEM. “Graded exercise therapy implies that you can exercise yourself into fitness and resolve the illness,” Bateman says. “When in reality, that’s not the case.”

Jordan, a 23-year-old who wished to omit his last name, says he was referred for pulmonary rehabilitation after two visits to Houston Methodist’s COVID-19 Recovery Clinic in the spring of 2022. He followed a program of increased aerobic exercise resembling GET for about a month. “24 hours after I finished each session I’d get a flare-up of symptoms,” he says.

 

[Sean]

 

[RedFox]

What patients find at long COVID clinics: rejection, outdated therapies, and unanswered questions
Roughly 16 million Americans are living with long COVID, but many are not getting the right medical care. One way to improve the system is by letting patients lead.

I've observed a trend towards increasing use of ME, and it's continuing:

ME, which is sometimes called chronic fatigue syndrome, is a disease that often appears in the wake of an infection.

They want to set up Centers of Excellence for long Covid:

Programs should standardize their training for physicians, too, which may be helped by the Biden administration’s proposed Centers of Excellence, so long as the model prioritizes infection-associated illnesses like ME.

Due to the lack of treatments, the main benefit will be not harming patients with CBT/GET. I hope this gets expanded to ME/CFS, as getting specialist care is basically impossible.

 

[Arnie Pye]

Merged
Title : What patients find at long COVID clinics: rejection, outdated therapies, and unanswered questions

Subtitle : Roughly 16 million Americans are living with long COVID, but many are not getting the right medical care. One way to improve the system is by letting patients lead.

Author : Miles W. Griffis

Link : https://www.popsci.com/health/long-covid-care-chronic-illness/?utm_source=pocket-newtab-global-en-GB

Published : 5 Dec 2022

This summer, the US Census Bureau reported that close to 16 million American adults are living with long COVID, a debilitating condition that lasts at least four weeks beyond an initial coronavirus infection and affects multiple organ systems. It has been observed in all age groups, and has placed stress on the US healthcare model that relies on short doctor’s visits. Even though high-demand clinics, sometimes called post-COVID care centers, now offer services for the illness, many fail the very patients they have set out to help. Long COVID patients share anecdotes about how the clinics they are admitted to often turn a blind eye to the gravity of their needs and fail to incorporate knowledge learned from myalgic encephalomyelitis, or ME, and other infection-associated illnesses.

Well worth reading, in my opinion. Has many mentions of ME, PEM, how GET is damaging, ...