By Mahlon Meyer
Northwest Asian Weekly
The isolation of being her mother’s full-time caregiver in hospice in a remote New Mexico town prepared Robin Macnofsky. The following year, she developed long COVID—and is still haunted by the disease.
The story of Macnofsky, now 61, highlights the complications—both emotional and physical—of those suffering from this grim illness as well as the limitations, and hopes, of medical science.
As of last week, over 460 million people worldwide have had COVID-19. Of those who develop mild symptoms, or none, studies suggest that a full 30% may face long COVID, which springs from the initial infection and then effloresces into other, often more horrific symptoms.
Of those who have been discharged from a hospital after a more severe bout of COVID-19, over 87% will develop long-lasting symptoms of long COVID, according to another study.
“The way I think about it, if only 10% of the people who’ve had COVID-19 develop long COVID,” said Macnofsky, “That’s still millions, tens of millions.”
A stigmatized illness
During the initial months of the pandemic and until recently in many places, long COVID was dismissed as psychosomatic. Patients were told they were experiencing panic attacks, among other things.
For Macnofsky, it had started simply—a headache, fatigue, and she chose to downplay her symptoms, having just cared for her mother for six months, who was wracked with pain until the end.
Macnofsky decided against a nasal swab in the early days of the pandemic when they were scarce, thinking someone else with more severe symptoms could use it.
When she finally took a test, as her symptoms worsened, it came back negative.
“Whatever this is,” she thought at the time, “at least it’s not COVID-19.”
A mystery illness
One of the problems with not having a definition of the disease, much less an understanding of how it works, is that there is no diagnostic test that a doctor can give a patient to see if he or she has long COVID. Instead, the doctors must first rule out any other diseases or ill health that could cause the symptoms.
“There’s no laboratory test that’s going to confirm long COVID, and a large part of it is making sure we don’t miss alternate diagnoses that we can treat with medication,” said Eric Chow, respiratory viral epidemiologist and the chief infectious disease fellow at the University of Washington (UW) Medical School. Chow was also one of Macnofsky’s doctors.
Upinder Singh, one of the founders of the Stanford long COVID clinic, said this is essential because other diseases can mimic long COVID.
“So if somebody just walks in if I was a primary care doctor, I would make sure of everything else, do their health maintenance, make sure they’re not anemic, make sure their thyroid is normal, all those other things, make sure there are no other problems,” she said.
In Macnofsky’s case, she eventually got to the point where she was unable to walk, think, or move. She stayed in bed like a “zombie” for days. Finally, her husband found her passed out one day on the bedroom floor and took her to the hospital. Then began even-more serious symptoms.
Lying on a stainless-steel slab—the kind used in a morgue, she thought—she watched blurry-eyed, without her glasses as almost a dozen surgeons moved around her. For this procedure, the patient must be fully conscious. She felt a long needle going into her heart, stopping just short so it could draw water from the sack surrounding it. The nurse showed her a big plastic bag with four cups of pink slurry fluid they had removed.
“I cannot accurately convey my overwhelming anxiety, sleepless nights, or general discomfort during my hospital stay,” she said.
A disease with no clear boundaries
One of the dangers of long COVID is that it both triggers and weakens the immune system. Researchers believe this is why many people then become infected with the coronavirus again and develop another case of COVID-19, on top of their symptoms of long COVID.
Macnofsky developed fevers, shortness of breath, scrambled thinking with language impairment, reduced cognitive ability (“like a car that won’t shift into gear”), severe headaches, sleeplessness, crushing fatigue (“like having concrete in my veins instead of blood”), depression and anxiety, and more recently, what she worries is short-term memory loss and the loss of the ability to multitask.
This is why, at clinics like Stanford, researchers are poring over new studies and new reports about the disease daily.
Linda Geng, co-director of Stanford’s long COVID clinic said, “New papers come out each day and sometimes multiple ones and then you have to discern: is this going to impact the way that I practice? Is this going to impact the way we think about long COVID? And you have to make that judgment call based on the rigor and context of the study and of course the individual patient in front of you.”
Signs of help
After her surgery, Macnofsky was isolated in a room with a drain attached to the sack around her heart.
One night, her mother appeared to her in a dream dressed in an outlandish costume, but one that fit with her life and personality. Her mother had been an artist and mask maker before becoming a Jungian psychotherapist. She was quite well-known in San Diego where she lived. At one point, she had worked with the sister of Mark Hamill, who had played Luke Skywalker, so she was a fan of Star Wars.
In the dream, Macnofsky saw her mother come down from the clouds on the kind of starship Senator Palpatine used in one of the later movies. She was dressed in a costume that seemed similar to the protective suits worn by nurses in the early days of the pandemic, but made from Japanese paper. And her face was barely visible because the mask was like that of a wolf.
“But I could see her eyes, and she was telling me, ‘I’m here,’” said Macnofsky, who is a former grant writer, poet, and on the editorial staff of the Berkeley Poetry Review.
Acknowledging the breadth of the crisis, the government is starting to throw resources behind increased research into long COVID, starting with a four-year study that seeks to enroll 15,000 people nationwide.
Researchers like Chow say it is crucial to assess data over the whole course of the illness.
Some of the pre-existing conditions or early signs that would indicate that a person is going to come down with long COVID are present only during the early stages. If doctors try to test for them later, while a person is actually experiencing all the full-blown symptoms of long COVID, some may not show up, said Chow.
What is surprising to clinicians and researchers, is that the disease can strike young people who’ve had virtually no symptoms at all while bypassing older folks who one might have expected to be susceptible.
Macnofsky also was surprised by this, when she eventually found a group online of other people enduring long COVID.
“Most of them were young, healthy people with no preexisting conditions, in really good shape, some were training for marathons and biathlons, some were professional dancers,” she said. “Today, people with a healthy lifestyle… think they have a strong immune system so they’re not afraid, but it’s going to come to get them—that doesn’t work for long COVID. Because you can have an asymptomatic or very mild case and in a few weeks, it’s going to come back again and again.”
Finding help is crucial
As Macnofsky passed through the following months, and now years, of her bout with long COVID, she has felt that her mother was with her.
So many people have long COVID that finding support is crucial. Even at clinics with as large a staff as Stanford’s, there are long waiting lists.
Experts recommend starting with one’s primary care doctor. And if you don’t have one, then get one immediately. That doctor can then refer you to a long COVID clinic, such as the one at Stanford or one at the UW.
Because the disease has so many manifestations, the clinic at Stanford, for instance, has a team of specialists representing infectious disease, internal medicine, cardiology, neurology, autonomic neurology, headache clinic, pulmonology, gastroenterology, rheumatology, sleep medicine, psychiatry, psychology, ENT, endocrinologists, and others.
“This is practically a list of all the specialists I saw in the hospital,” said Macnofsky. “I mean, seriously, they were just coming and going.”
People can also enroll in studies, such as the National Institute of Health (NIH) RECOVER study.
New horizons—or not?
Macnofsky is now able to articulate what was once unspeakable.
When Chow, for instance, put her in front of a computer to choose a new primary care doctor within the UW system, she felt paralyzed. She could not explain that her brain was “broken.” She could hardly sustain a conversation.
Today, two years later, she has recovered significantly, but still has trouble walking up hills.
But in one sense, Macnofsky was one of the luckier ones, if that word can be used for someone who has gone through what she has.
Thankfully, she had medical insurance. And a loving husband with a stable job.
Many people in her long COVID survivors’ group, in this respect, fared much worse—and lost hope.
“Many lost their jobs, their savings were wiped out, their marriages fell apart, they lost their medical insurance,” she said.
For those who are infected with COVID-19, one of the most promising things to emerge recently is the possibility that new oral drugs might prevent the development of long COVID.
“That’s the million dollar question,” said Annie Luetkemeyer, a professor at the University of California, San Francisco Medical School, in response to a question from Northwest Asian Weekly during a March 17 presentation sponsored by the University of Southern California Annenberg Center for Health Journalism.
Luetkemeyer said, “it stands to reason” they would make a difference in slowing or preventing the development of long COVID, because, as with other viral diseases, such drugs reduce inflammation, which is one of the trip-wires that seems to lead to long COVID.
Still, few people can presently get these antiviral drugs in time to take them so that they would be effective, according to Aaron Carroll, the chief health officer at Indiana University, who also spoke at the Annenberg presentation.
The U.S. health system has been set up to prevent people from getting care, he said, which translates into delays in getting the drugs, such as Paxlovid or Molnupiravir. Unless these new oral drugs are taken within days of the onset of symptoms, it is too late for them to be effective.
Unless one has vast resources and time, he said, it is virtually impossible to get in to see a doctor on the same day one asks for it, making it impossible to get a prescription for the drugs immediately. Added to that is the delay in finding a pharmacy that stocks the pills.
Moreover, most of the new drugs must be taken in high quantities, up to 40 pills within five days, making it difficult for some.
Today, Macnofsky celebrates that she can walk her dog for an hour, cook meals for her family, and clean her house.
“These feel like victories.”
Meanwhile, medical researchers have had their own breakthrough—it is now found that vaccines greatly reduce the chances of developing long COVID.
“Based on the available data, it seems that vaccines function in two ways to prevent long COVID—one, by preventing the infection itself and two, by reducing the odds of persistent symptoms in situations where infection occurs after vaccination,” said Chow.
Macnofsky insists that her condition improved markedly following each dose of the vaccine.
“My walking endurance improved, the fatigue diminished, my headaches diminished, the list of symptoms occurred less frequently. The daily fevers were gone,” she said—although now that her booster is fading after six months, the fevers are slowly returning.
“I’ve bought a really cool paddleboard,” she said. “And by this summer, I’m going to be up on it, even if I’m not standing.”
To enroll in the NIH RECOVER study, go to openredcap.nyumc.org/apps/redcap/surveys/?s=TYCLM7PE97
For the UW’s long COVID clinic, go to
For a list of long COVID clinics around the country, go to survivorcorps.com/pccc
This health series is made possible by funding from the Washington State Department of Health, which has no editorial input or oversight of this content.
Mahlon can be reached at firstname.lastname@example.org.