Thread by @Dakota_150

"How to Get Help for Long COVID in NYC"

'There are care clinics for long COVID, local support groups, and ideas from those living with this illness. Here’s what you should know if you’re trying to navigate chronic symptoms in New York City'

thecity.nyc/2023/1/10/2354…

Jenna Bitar, 30, caught COVID in March 2020, just as schools were shutting down. What started as a bad cold “got scary very fast,” said Bitar.

Within a few weeks, they were experiencing a sore throat, debilitating fatigue and a racing heart rate when sitting or standing...

“I would try to water my plants or fold my laundry and have to lay down with a fever,” said Bitar.

Bitar’s symptoms stretched on. “I’ve had to grieve the loss of my brain function, memory, cognition while also losing my relationships, any semblance of independence..

Dr. David Putrino, the director of rehabilitation at Mount Sinai, noted three red flags to look out for. Beware when clinicians:

- Act as if they’ve never heard of long COVID
- Attempt to psychologize your symptoms without investigation
- Frame long COVID as simply the result of

deconditioning, meaning fatigue and weakness caused by changes to the heart, lungs and muscles during a period of inactivity, decreasing one’s ability to be active.
In all three cases, “it indicates that your physician is not being science-based in their approach to providing

care,” said Putrino. “Anyone who is attempting to psychologize your symptoms, saying, ‘You’re depressed. You have trauma. You have anxiety,’ without digging into your symptoms, that is a big red flag.”

Not all fatigue comes from deconditioning, and assuming so can be harmful. For some people, physical, mental and emotional exertion may cause worsening symptoms, or what’s known as post-exertional malaise (PEM). The recommended approach to PEM is not exercise, but activity

management or pacing, according to the CDC."

For some New Yorkers with long COVID, learning about associated conditions can be useful. If you’re experiencing debilitating fatigue and worsening of symptoms after exertion, or dizziness and racing heart rate when sitting or standing, here are two conditions to know about:

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a complex and debilitating condition whose hallmark symptom is PEM. It’s estimated that up to 50% of people with long COVID meet the diagnostic criteria.

Postural orthostatic tachycardia syndrome (POTS) is a type of dysautonomia, or dysregulation of the nervous system. It’s been linked with long COVID.

To reduce the risk of reinfection, “People with long COVID can use layered protections,” said JD Davids, co-founder of The Network for Long COVID Justice, recommending high-quality masks, as well as air filtration and ventilation.

For people with long COVID who may also be living with ME/CFS or dysautonomia, clinicians and patients recommended the following support groups:

#MEAction Network is a nonprofit organization that supports people living with ME/CFS. The organization offers a wide array of

support groups by location, affinity and interest, including a group for New Yorkers.

Dysautonomia International is a nonprofit organization that supports people with autonomic nervous system disorders. The organization is home to global, local, and identity-based...

support groups, including a New York state group."