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For some patients, long COVID is their new reality

SEMHAR FISSEHA: So it's 8:06 a.m.

AUDIE CORNISH, HOST:

Before she got sick this January, Semhar Fisseha was a healthy, active 39-year-old woman.

FISSEHA: I can already tell that today's going to be a recovery day.

CORNISH: She took 45-minute walks every day. She was starting to plan summer vacations with her 9-year-old daughter.

FISSEHA: I woke up with a deep fatigue. I had a four-activity day yesterday.

CORNISH: That deep fatigue is one of the most frequently reported long-term effects of COVID-19. Now even activities that many of us take for granted can come at a big cost for her.

FISSEHA: I showered, I bathed my daughter, I went for a walk, and I washed the dishes, which is a lot in one day.

CORNISH: Fisseha also experiences chest pain and a racing heart.

FISSEHA: My heart rate has been pretty up and down. It's gone up to 120s, 130s without any real activity. So I'm going to take it easy today, drink lots of fluids, electrolytes.

CORNISH: Fisseha is a senior administrator at Weill Cornell Medicine. Some days she wakes up feeling optimistic, like she'll be able to cross a lot off of her to-do list.

FISSEHA: I'll take a shower and work the full workday. I'll be able to prepare lunch and then dinner for when my daughter comes home.

CORNISH: But she can't count on that energy to last.

FISSEHA: I feel low-energy again. I've had a couple of meetings, and I think just the talking during the meetings has drained me a little bit. So I'm rethinking.

CORNISH: The NIH has a name for these long-term effects - post-acute sequelae of SARS-CoV-2, or PASC, more simply long COVID. And the patients who have it are desperate for answers.

ANN PARKER: It's really important that we recognize and admit that we do not have all of the answers, right? In medicine, it is very rewarding to be able to point to a specific test and make a diagnosis and put it all together in a nice, neat package with a tidy bow. But a lot of things in medicine are messy, and this is one of them.

CORNISH: No one really knows how common long COVID really is, but it isn't rare. A study published in JAMA Network Open found that some 30% of participants across multiple age ranges reported persistent symptoms. We're talking six months after their COVID-19 infections. There could be between 3 and 10 million people in the U.S. who experience persistent symptoms related to the coronavirus infection. For some people, long COVID is temporary, and those symptoms fade after a few months. For others, long COVID feels like their new reality. Michael Sieverts is one of them, and he remembers exactly when he started feeling sick in 2020.

MICHAEL SIEVERTS: So this was March 18. Around noon, I started to get a fever.

CORNISH: His sense of taste and smell became metallic, but the fever was his worst symptom. And it was gone by April 1.

SIEVERTS: I was acting like somebody who was getting better. About three or four weeks later, I had a very strange episode when I was doing some work in our garden, digging up some weeds. And suddenly I can't breathe. My chest is so tight. I feel like I'm having a heart attack.

CORNISH: He called his doctor, who didn't think it was one. Sieverts had an EKG a couple of months before. His heart was healthy. Then his doctor said...

SIEVERTS: We're hearing that COVID is doing this. We're hearing that something happens when people think they're on the road to recovery, and something about COVID hits them a second time.

CORNISH: More than a year later, Sieverts still has a mix of symptoms - fatigue, dizziness, nausea. He spoke with NPR's Mallory Yu, who's been reporting on long COVID.

MALLORY YU, BYLINE: Nowadays, Sieverts says he manages all right.

SIEVERTS: I am generally able to do an hour or two of work in the morning. But a big chunk of the day, usually starting around noon or 1, just - OK, I'm shutting down. This is it. If I go further, I'll pay the price.

YU: What he's referring to is known as post-exertional malaise. It's one of the defining characteristics of long COVID, a worsening of symptoms like pain or fatigue after physical or mental exertion. And that physical or mental exertion doesn't have to be strenuous, either. For Sieverts, it can be triggered by a jolt of adrenaline from dropping a plate or attending one too many Zoom meetings.

ALBA AZOLA: I have patients that have to choose whether to shower or to eat. It can be that impairing in some cases.

YU: Dr. Alba Azola is co-director of a new medical team at Johns Hopkins that specializes in long COVID. They're known as the post-acute COVID team, JH PACT for short.

AZOLA: There's certainly kind of patterns emerging in terms of the clinical presentation, but every patient is different.

YU: One study found that there are more than 200 symptoms associated with long COVID, many of which can affect multiple organs or systems within the body. Some patients may experience issues with their breathing, digestion and blood pressure. Others report that they've developed an immune disorder called Mast Cell Activation Syndrome, which results in repeated episodes of allergy symptoms.

AZOLA: What complicates things is there's no straight, cookie-cutter way to approach treatment.

YU: And because there's no cookie-cutter approach to treatment, Johns Hopkins has brought together all sorts of specialists to treat these patients - physical therapists, neuropsychologists and pulmonologists like Dr. Ann Parker.

PARKER: I am co-founder and co-director of the JH PACT program.

YU: Doctors typically spend between 13 and 24 minutes with their patients. At JH PACT, Dr. Parker spends at least an hour, and they cover as much as possible from past illnesses and conditions to family medical history.

PARKER: Sometimes it's helpful to keep a diary or to keep notes, which a lot of our patients do, both through their initial illness and then throughout their recovery.

YU: The more information patients can share with Dr. Parker, the more she can focus on their most limiting symptoms.

PARKER: For some folks, it can feel like there's a mountain ahead of them, a mountain of various symptoms and challenges in their recovery. So I hope that it's helpful to sort of break that down so that each piece is more addressable in turn instead of trying to conquer everything at once.

YU: For Semhar Fisseha, the senior administrator from Weill Cornell Medicine, it's been a lot of trial and error since the onset of her long COVID symptoms in February this year.

FISSEHA: I was really active and social. And to go from that to basically being homebound and having to calculate the energy that I have for just the basic activities that I took for granted before - how do you wrap your mind around that?

YU: On her worst days, Fisseha can hardly get out of bed. On her best days, she can work a full day and still have energy to play with her daughter when she gets home from school.

FISSEHA: Every morning when I woke up, I had to plan out my day in advance depending on what my body could handle.

YU: Now Fisseha has more good days than bad ones. She says she's feeling better.

FISSEHA: I live on a third-floor walkup in Brooklyn, and I celebrate being able to go get the mail. I can even walk to the corner of my block and walk back. And being able to walk for 10 minutes for me is a big deal. And being able to even take a shower every day is a huge success compared to how I was even just a couple of months ago.

YU: For Fisseha and long COVID patients like her, each step is progress, no matter how small.

CORNISH: That was NPR's Mallory Yu, who's been reporting on long COVID. Now, there's a long way to go in figuring out what long COVID is and how exactly it affects people's bodies, let alone predicting how long it could be until symptoms go away. And that's if they ever do.

ALISON SBRANA: No one can give you an end date.

CORNISH: Alison Sbrana knows better than most people what that means. She has ME/CFS, myalgic encephalomyelitis, chronic fatigue syndrome. And it's a disease with a lot of symptoms that overlap with long COVID. Sbrana is a board member of Body Politic. That's a health justice organization that runs a support group for people with long COVID. And she knows what it's like to cope.

SBRANA: You need to give radical acceptance to yourself that this might be a new normal for you and figure out how to build a fulfilling life with how your body and your brain is right now. And on the other hand, you need to hold space always for hope that there might be a new treatment or a protocol that helps improve your functioning.

CORNISH: On a practical level, she also wants people with long COVID to know this.

SBRANA: In this time, they very likely have a disability and would qualify for accommodations at work or school. They might qualify for the disability benefits that they have through work or through something like Social Security.

CORNISH: But there are barriers to getting those disability benefits. Many people seeking benefits never received a positive COVID test because they were in such short supply at the beginning of the pandemic. Still others are having trouble proving they have long COVID. Their bloodwork is clean. Other tests look normal.

JAIME SELTZER: There is this presumption that perhaps it's just depression or anxiety or perhaps it's the pandemic and the state of the world. But people know when there's something wrong with them.

CORNISH: Jaime Seltzer is the director of scientific and medical outreach at MEAction, which advocates for people with ME/CFS. Seltzer says there are lessons doctors and researchers can learn from patients like herself.

SELTZER: We do not have to reinvent the wheel. People with chronic complex disease have been living with this for decades. Researchers have been studying this for decades. We definitely need to make use of the path that we've beaten down over time and start basing some of our hypotheses off of what we've seen in these diseases with other labels.

CORNISH: Because for some people, long COVID won't go away anytime soon.

(SOUNDBITE OF SAYCET'S "NORTHERN LIGHTS") Transcript provided by NPR, Copyright NPR.

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