What Is Long COVID? Experts Explain Symptoms and Answer Common Questions

Angela Meriquez Vázquez initially experienced mild cold symptoms when she was diagnosed with COVID in March 2020. This acute phase lasted three months until Vázquez began to develop increasingly worrying symptoms which included blood clots, mini strokes, seizures, and newly developed food allergies.

Her symptoms were dismissed by medical professionals leading Vázquez to question her trust in the health care system. “I have to believe that my identity as a Latina and a young woman played no small role in that” she says, “and I imagine, you know, if I had been white, I may have been offered more investigative testing at the beginning of my illness and more supportive care up front that really could have mitigated the trajectory of my symptoms.”

Now, more than a year and a half after her initial COVID diagnosis, Vázquez says she’s nowhere near back to normal. Once an avid runner, she now suffers from chronic fatigue syndrome, bouts of confusion, sleep apnea, heart palpitations, and severe migraines.

After the National Institute of Health’s $1 billion initiative to gather more data on the long-term consequences of COVID in early 2021, reports of long COVID-19 have been on the rise. This November, KQED Forum’s Lesley McClurg spoke with experts and a patient on what is currently known and being researched about the long-term effects of the virus:

• Angela Meriquez Vázquez, long-haul COVID patient
• Juliet Morgan, neurologist and chief resident of psychiatry at UCSF
• Upinder Singh, infectious disease expert at Stanford University
• Zackary Berger, associate professor at Johns Hopkins Institute of Bioethics

The following interview has been edited for length and clarity.

What do we know about long COVID-19? 

Upinder Singh: We’re at the beginning of a long road. We only know some things about long COVID. We know that it’s a real condition, and that people feel terrible and they have multiple symptoms. We know that everybody with long COVID can present differently. We also know that people who had mild disease with COVID can get long COVID. It’s not limited just to people who had severe illness in the ICU.

We know the vaccines are effective and safe, and they decrease the symptoms that people get even if they have breakthrough infections. So anybody who’s vaccinated and gets a breakthrough infection is more likely to have milder symptoms and prevent hospitalization and death. We do think that people who have breakthrough infections may still be able to get long COVID, but the hope is that their symptoms are milder and that their resolution is faster.

Zackary Berger: There’s some indication that vaccinated individuals who have COVID symptoms have a lesser chance of developing long COVID. But a lot of the literature is difficult to interpret, and it’s still in the early days.

We have to see the right kind of evidence, and then when a patient needs answers, we try to get them answers. But long COVID is very difficult clinically. People want answers, and sometimes they don’t even have a doctor to go to and can’t even get testing, and that’s where we need to work just as hard as we do determining which tests to do.

Is Long COVID-19 psychosomatic?

Juliet Morgan: We have to be very humble when discussing mental health and long COVID because, at least from the patients I’ve taken care of, I can’t imagine that this is entirely generated by a primary psychiatric illness. We also know that there are these abnormal markers when we are looking at research studies that suggest that there’s more going on beyond psychiatric manifestations.

It’s hard for an ailing body not to then generate an ailing emotional response. I haven’t taken care of a long COVID patient who doesn’t have anxiety and depression. Many people who had anxiety and depression before they had long COVID have experienced worsened symptoms.

What is the best approach to long COVID-19 care?

Upinder Singh: Now, a year and a half into the pandemic, we have an understanding that there is a very real, very physical condition called long COVID. I would really encourage individuals to talk to their primary care physicians, and if their primary care physicians are not comfortable with or don’t have the experience with long COVID, seek out a long COVID clinic.

Although two different long COVID patients can experience some overlap, their symptoms are often quite distinct. So you do really need a multidisciplinary approach where you can have a central provider who has some expertise in long COVID, who can then call in a neurologist if you’re having neurological issues or call in a cardiologist if you’re having cardiac issues. This is a very tough disease to go through alone.

Juliet Morgan: Along with Dr. Jobs, a palliative care physician at UCSF, I run a long COVID integrative medicine skills group for recovery, so we’ve seen a lot of long COVID patients.
Unfortunately, Angela’s story is nothing rare. I wish that we heard stories that were different from hers, but we had many, many participants who have been suffering and felt invisible, unheard and really invalidated.

We bring people together with knowledgeable physicians to think about how we’re going to tackle long COVID together. We looked at what interventions have worked in other chronic conditions where people have increased inflammation or an over-activated, sympathetic nervous system, and we decided we wanted to emphasize interventions like mindfulness, coping strategies, and cognitive behavioral therapy.

The most important part of this recipe was bringing people with long COVID together into the same space so they could teach each other.

What is causing long COVID-19?

Zackary Berger: We must understand long COVID as a multi-domain phenomenon. So there’s the individual body of the person that undergoes a variety of symptoms which can be really unique from person to person. Then there’s the social body; the collective. The collective is more than just the sum of individuals.

COVID has been a social phenomenon that has affected many groups in our society. So, COVID and long COVID acts on multiple levels at once, which makes it hard to define and to treat. This means that these symptoms of long COVID are exacerbated by social phenomena, which people tend to overlook as outside the realm of medicine, and that’s completely false. This leads us to a concentration on biomedical solutions when there’s a lot that needs to be done for patients suffering from long COVID that’s not made in a lab or found in a lab test.

Will long COVID-19 care affect care for other chronic illnesses?

Juliet Morgan: Long COVID is bringing all of these other long-haul illnesses out from the shadows. However, our medical system has had difficulty with understanding how we treat this population, and I am very hopeful that all of this research and all of this thought being put into long COVID will help us to expand how we can help people who’ve identified with post-viral post-infectious syndromes for 20 or 30 years and have felt really abandoned by our medical system.

Long COVID-19 moving forward

Zackary Berger: Because long COVID as a disease that develops in time differently from person to person, it requires a multidisciplinary team of people. Relief of pain is really important. Physical activity is really important, and providing specific treatment for symptoms like myocarditis and lung conditions associated with long COVID is really important. Unfortunately, there isn’t one specific answer to long COVID, but there are treatments out for their very specific things. Sometimes what works best is an incremental approach to chronic symptoms.

Juliet Morgan: There isn’t a one size fits all approach to long COVID; it’s about finding a provider, a practitioner that you feel is hearing you and that you develop with that person a plan for each of the issues going on with you.

Upinder Singh: We want to be careful that we aren’t too quick to diagnose people who develop symptoms after having an episode of COVID as having long COVID. Part of engaging with a primary care provider is to make sure there’s no underlying issue. We’ve been in a pandemic for 18 months and people have developed hypothyroidism or other cardiac issues during that time that may be causing their symptoms.