For patients with long COVID, chronic fatigue syndrome may offer a guiding star
Long COVID has been a reality since the beginning of the pandemic. The patients who have it are desperate for answers that doctors don't yet have.
Before she became sick with a coronavirus infection in January, Semhar Fisseha was a healthy, active 39-year-old.
She took walks every day and planned summer vacations with her nine-year-old daughter. Now, even activities that many people take for granted can come at a big cost.
"I woke up with a deep fatigue," she says in an audio diary one October morning.
"I had a four-activity day yesterday — I showered, I bathed my daughter, I went for a walk, and I washed the dishes."
Fisseha also experiences chest pain and a racing heart.
"My heart rate has been pretty up and down," she says in another audio diary. "It's gone up to 120s, 130s without any real activity."
Fisseha is a senior administrator at Weill Cornell Medicine. Some days, she wakes up feeling optimistic, like she will be able to cross a lot off her to-do list: Shower, work a full work day, prepare lunch and dinner for her daughter.
But she can become drained just from talking during work meetings, forcing her to rethink her plans.
The deep fatigue Fisseha experiences is one of the most frequently reported long-term effects of COVID-19. It's known as "post-exertional malaise," a worsening of symptoms such as pain or fatigue after physical or mental exertion.
"I was 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?" she said.
The National Institutes of Health refers to these long-term effects as "post-acute sequelae of Sars-CoV-2 infection", or PASC.
One study found more than 200 symptoms associated with long COVID, many of which affect multiple organs or systems within the body. Some patients experience issues with their autonomic nervous system, which is responsible for breathing, digestion and blood pressure. Some have developed mast cell activation syndrome, a condition that results in increased risk of anaphylaxis. Many also report brain fog, trouble with their memory and concentration.
Johns Hopkins assembles a crack team
Patients who have long COVID are desperate for answers that doctors might not have.
"It's really important that we recognize and admit that we do not have all the answers," says pulmonologist Dr. Ann Parker, co-founder and co-director of Johns Hopkins Post-Acute COVID Team (JH PACT).
"[With] medicine, it's very rewarding to be able to point to a specific test and make a diagnosis and put it all together in a nice package with a tidy bow. But a lot of things in medicine are messy, and this is one of them."
No one really knows how common long COVID really is, but it isn't rare.
A study published in JAMA Network Open found that about 30% of participants across multiple age ranges reported persistent symptoms more than six months after their COVID-19 infections. The American Academy of Physical Medicine and Rehabilitation estimates that between three and 14 million people in the United States could experience persistent symptoms.
Other, more conservative estimates based on data from more than 1 million people in the UK, put prevalence of long COVID at around 5%. That would equate to a little over 2 million Americans.
For some people, long COVID is temporary, and those symptoms can fade after a few months. For others like Fisseha, long COVID feels like a new reality.
"What complicates things is there's no straight kind of cookie-cutter way to approach treatment," says Dr. Alba Azola, who is co-director of the JH PACT program.
"There's certainly patterns emerging in terms of clinical presentation, but every patient is different."
Because there is no singular approach to treatment, Johns Hopkins has brought together all sorts of specialists as part of JH PACT. This includes physical therapists and rehab specialists like Dr. Azola, as well as neuropsychologists and pulmonologists.
One of their approaches is simply time.
Doctors typically spend between 13 and 24 minutes with their patients. At JH PACT, Dr. Parker and other physicians spend at least an hour to cover as much as possible, from past illnesses and conditions to family medical history. That can be a lot to remember.
"Sometimes it's helpful [if] they keep a diary or keep notes, which a lot of our patients do," Dr. Parker said. "Both through their initial illness and then throughout their recovery."
The more information patients can share with her, the more she can focus on their most limiting symptoms.
"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 each piece is more addressable in turn, instead of trying to conquer everything at once," Dr. Parker said.
What patients can learn from chronic fatigue syndrome
There is still a long way to go in figuring out what long COVID is and how it affects people's bodies, let alone predicting how long it could be until symptoms go away, if they ever do.
Alison Sbrana knows better than most people what that "if" means.
She has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It's a disease with a lot of symptoms that overlap with long COVID.
Sbrana knows what it's like to cope with getting sick and never recovering. It is part of the reason she is a board member of Body Politic, a health justice organization that runs a support group for people with long COVID.
Sometimes, people join the group and ask, "How long do I have to live like this?" Sbrana doesn't have that answer — nobody does — so, instead, she tells them: "This might be a new normal for you and you need to figure out how to build a fulfilling life with how your body and your brain is right now."
She acknowledges it might be difficult at first.
"On the other hand, you need to hold space always for hope that there might be a new treatment or protocol that helps improve your functioning."
One thing that might help is disability accommodations.
"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 Social Security," Sbrana said.
But there are barriers to getting those disability benefits. Many long COVID patients never received a positive COVID test because they were in short supply at the beginning of the pandemic. Still others are having trouble proving they have long COVID because their blood work is clean and other tests look normal.
"There is this presumption that perhaps it's just depression or anxiety, or perhaps it's the pandemic or the state of the world, but people know when there's something wrong with them," says Jaime Seltzer, director of scientific and medical outreach at #MEAction, which advocates for people with ME/CFS.
She says there are lessons doctors and researchers can learn from people like herself.
"People with chronic complex disease have been living with this for decades. Researchers have been studying this for decades," Seltzer says. "We definitely need to make use of the path that we've beaten down over time and start basing our hypotheses off of what we've seen in these diseases with other labels."
For some people, long COVID won't go away any time soon, but the hope always remains.
Fisseha has spent the last nine months addressing each piece of her disease, and lately, she's been having more good days in between the bad ones. She is no longer stuck inside her third-floor walkup in Brooklyn. And she has learnt to appreciate the little wins along the way.
"I celebrate being able to go get the mail. I can even walk to the corner of my block and walk back," Fisseha said. "Being able to walk for 10 minutes for me is a big deal."
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