As medical students, we all take the Hippocratic oath—a pledge to help patients and, of course, not to cause harm in any treatments we provide. It is a core element in the care of our patients. We would never want to do anything that could make things worse. But is it that simple?
As medical diseases have become more and more complex, can we ethically say we will not offer a treatment that may help because it also may not—or even possibly could have negative outcomes?
Over the past three years, I’ve had the unfortunate and unwanted role of not just being the provider to a child with a chronic condition but being the mother. My daughter, now 15 years old, got the COVID vaccine and three months later contracted a COVID infection in December 2021. On February 4, 2022, our lives changed forever. She was coming home from a tournament and had a horrible headache and vomiting. Like most parents, we assumed it was a viral illness and that she needed rest and fluids. The following days and weeks proved us wrong. She had severe, recurrent debilitating headaches and unrelenting baseline headaches. She was admitted for intractable headaches in mid-March. I remember asking the doctors if this could be long COVID, and their response was a flippant, “Maybe, but there’s nothing we can do about it.”
Over the next few months, each system presented with an ailment. After her headaches came stomach pains with no answers, then dizziness, chest pain, shortness of breath, brain fog, insomnia, fatigue, and, of course, mental health deterioration soon followed with depression and anxiety. By June 2022, we knew without a doubt this was long COVID—or post-acute COVID sequela (PACS)—but what did that really mean? Was that a diagnosis or a description of an event? We were seen by a long COVID clinic in Los Angeles that told us her symptoms were real, they would get better, and she should eat well and rest. That seemed like decent advice, but it was absolutely not helpful.
She did not get better. She was not able to sleep. Her stomach hurt so much she couldn’t eat regularly, and yet the clinic had nothing to offer. Do no harm.
So, we let her rest. She stopped all activities that summer, and all we noticed was a continued decline in her health. I learned about Facebook groups geared towards long COVID and one in particular for kids. I learned about PoTS, ME/CFS, EDS, MCAS, gastroparesis, brain fog, insomnia, and headaches—all from PACS. But I learned nothing about these potential diagnoses from medical doctors who specialized in this disease. Do no harm.
We found out about a facility in Denver, National Jewish Health, that was helping kids with PASC. In a two-week program, she was diagnosed with PoTS, airway disease, gastroparesis, and other long COVID-related conditions, and we left with a treatment plan. Due to our insurance restrictions, we paid for this stay out of pocket, and we are fortunate and privileged that we could. She very slowly improved, returning to school and starting to play her sport until December 2023, when she contracted her second COVID infection. We didn’t even know she was infected until days later when my husband and I tested positive and deduced that was what she had five days earlier. I tried to stay calm and hope it would not affect her again, but unfortunately, four weeks to the day, she once again had a debilitating headache, and 11 months later, we are no better than we were two years ago. She is unable to participate in school and sports despite every effort for a different outcome.
I reached back out to the long COVID clinic at a prestigious children’s hospital. Surely, two years later, there would be something—anything—that could be offered. I was holding on to a small glimmer of hope. But that hope was dashed with the response of “We have nothing to offer.” Do no harm.
We have found very few doctors willing to research and try different off-label treatments. And yes, with each treatment, we consider first do no harm, but we also must consider the harm of this awful disease. We need to weigh the risk of every treatment against the risk of no treatment.
No treatment means: chronic daily headaches, sometimes so debilitating all we can do is sit in a dark room and hold her; it means chronic abdominal pain; it means chronic fatigue, unable to get up for school, let alone participate in a sport that she loved or any other activities; it means missing school, life, friends, and everything important to a 15-year-old girl. It means saying no to classes and activities that were an automatic yes in the past. Is this how we are willing to define first, do no harm as a medical community?
I wish my daughter’s story were unique. I wish she were one of few suffering this way, but she’s not. By the most conservative estimates, there are anywhere from 4.5 to 6.5 million children with long COVID in the United States, suffering and giving up years of their life with no end in sight. (For my daughter, it’s been 20 percent of her life thus far spent suffering.) By comparison, there are 6 million children with asthma and around 15,000 children diagnosed with cancer each year. We are no longer dealing with a rare disease, only a rarely diagnosed one. Unfortunately, this illness is hidden. When children feel well enough to leave the house, they look great. (No one sees them the days before and after, unable to get up from their bed, typically in pain.) It’s also hidden in lab results, unless you are looking for very specific abnormalities that may or may not show anything. How do we know what these kids have if they have anything? (Note that studies reporting lower incidence of long COVID in kids than adults have been retracted, and rates in children seem to shadow the rates of long COVID in adults.)
1. Doctors need to listen—like really, really listen. Even if your patient looks amazing, even if their labs are normal, do not assume this is psychosomatic because you can’t find a cause. Do not assume this will get better because you can’t find the etiology. This is hubris at its core. Awareness is the first step in treating any ailment, and doctors need to be on the lookout for this vague symptom presentation. And awareness is only the first step. These patients still have an incredibly long road to recovery. As a physician, make sure to access your resources for long COVID care, which brings me to my second point.
2. We need more resources. In my state, there is only one long COVID clinic for kids, and you guessed it—it’s the one that couldn’t offer us anything. I have been to three states in search of help for my daughter and am considering a fourth that is across the country. Pure insanity! This is obviously not a viable option for most people. Even if you could afford it, we are asking extremely sick kids—physically, emotionally, and mentally exhausted patients and families—to fly around the globe for diagnosis and treatment. Or, if you try to see different specialists in one city, it could take you 6 to 12 months to get an appointment, hoping the specialists can actually offer something (many of them have no experience with long COVID). You then have to relay the messages from one doctor to another because they don’t talk to each other! This disease needs multidisciplinary care with good access and in one central location. To put the onus on these patients is like diagnosing someone with an infection but not telling them where the infection is, which medication may help, or even if it needs medication. And then imagine that for every single system in the body!
3. We need more research. As of this writing, there is one research study with a treatment arm for kids. And in this particular study, only about 15 to 20 percent of the participants are eligible for the treatment, and one-third of those participants are getting a placebo. Not sure I need to emphasize this, but I will: we need more research for kids. As pediatricians, we know we cannot treat kids as little adults. Pathophysiology of disease often differs. But because of the outrageous lack of studies, we are left treating kids with data from the adult world and hoping and praying it works and, more importantly, does no harm. Bottom line, we need a lot more funding!
4. We need the providers seeing long COVID patients to communicate. We need shared knowledge on this very new, very disruptive disease. We need to find an accessible, shareable database that can make significant differences in patients’ lives—especially those without access to a dedicated long COVID clinic. We cannot work in isolation and hope things will work out. With the paucity of knowledge, we need to make what we do know more accessible.
5. Believe and believe in your patients. No gaslighting. I don’t think doctors are truly gaslighting their patients (I hope not), but I think it’s’ a symptom of being a part of a broken medical system. A system rigged against patients and doctors. A system infinitely impossible to navigate with a “rare” chronic disease.
I know as physicians we must always uphold a minimal standard of do no harm, but I urge you to think of another standard as a very close second: we must give hope. Whether a treatment will work or not, when we try something, we are giving our patients hope. We are giving them the possibility that they may one day return to full functionality. We are saying we are not giving up, and neither should they. This is the message our patients need—especially our young children and their
Elham Raker is a pediatrician.
