It’s estimated that of the 543 million COVID-19 infections globally since the pandemic started, 1 in 5 people who have had COVID continues to display symptoms of long COVID. This complex post-viral condition can include a wide range of symptoms, the most common being:
- Breathlessness
- Brain fog
- Anxiety and depression
- Fatigue
- Loss of appetite
Medicine has so far failed many of these “long haulers,” yet a world-first program at Mayo Clinic is consistently steering teens and young adults with the condition back to functional living. This work is happening at Mayo Clinic’s Pediatric Pain Rehabilitation Program, which opened in 2008 to treat children whose various pain and fatigue symptoms have become chronic, leading to a breakdown in everyday life. Having mastered treatment for conditions including chronic fatigue, migraines and abdominal distress, the program’s medical director, Tracy E. Harrison, M.D., teamed up with psychologist Cynthia Harbeck-Weber, Ph.D., L.P., to adapt their program to treat kids with long COVID — this after noticing that long COVID symptoms overlapped with so many conditions they already treated. We spoke to them about what it takes to get kids back up on their feet and enjoying life again.
MAYO CLINIC PRESS: How did you come to realize your pain rehabilitation program could also help kids with long COVID?
DR. HARRISON: We run a program where we see young people who have had viruses or an illness in the recent past. They’ve been out of school for a long time, find it difficult to do their schoolwork and report difficulty concentrating. They may be missing meals due to symptoms and they are excessively tired. Since our program started in 2008, a lot of patients with similar symptoms have come to our program. Adding to this, with the pandemic, we‘ve seen young people who had been functioning as typical teens contract COVID-19 and come into our program for assistance getting back to their typical state of health and functioning.
MCP: What is the usual path of a child or teenager suspected of having long COVID to entering your program?
DR. HARBECK-WEBER: To get to us, someone would see their pediatrician or internal medicine doctor and they decide together that their symptoms aren’t improving and are severe enough that they are getting in the way of their functioning — and this problem has been diagnosed as long COVID. The child will usually be saying something like: My symptoms are so bad I can‘t think, I can‘t do my homework, I can‘t go to school, I can‘t go to dance class. That’s when they get referred to us. We start by doing an evaluation to make sure the medical workup has been done thoroughly, so the family and physician feel ready to move on to treatment.
By the time we first see them, they will have had these symptoms for at least three months — but probably more like six months to a year — and they are definitely chronic and at that point, fairly stable, getting neither better nor worse. If they were briefly improving, they have now plateaued and they’re no longer improving. And that’s why the family says, “We really need to do something different.”
DR. HARRISON: That time frame of symptoms running on for a minimum of 3 to 6 months, that’s the criteria for chronic pain. When we see someone, they’ve been treated with standard medical care and they aren’t getting better. They continue to have pain that has had a negative input on their ability to function as a typical adolescent.
MCP: What are the first steps in treating a patient with long COVID?
DR. HARBECK-WEBER: We start with symptom management. If fatigue is their primary concern, we’re going to help them consistently increase their level of activity. If their primary concern is headaches, we’re going to teach them pain management skills like diaphragmatic breathing and different kinds of relaxation strategies.
And then we’re going to look for things that may be contributing to symptoms, such as anxiety. I have these symptoms and they‘re not getting better and I‘m really scared. What does this mean for the rest of my life? We might help someone take a look at their thoughts and worries. Which ones are helping? Which ones are getting in the way? And what are we going to do with those that are getting in the way?
MCP: How do you help someone who is exhausted get active again? Their mind may be saying “Let’s get active,” but their body says “Stay in bed.”
DR. HARBECK-WEBER: For this, there’s a behavioral piece and there’s a cognitive piece. The behavioral piece is taking someone where they’re at and helping them consistently make further steps. Someone might say “I can only walk three steps before I’m exhausted.” We might respond by saying “All right, we want you to walk 10 steps, three times a day.” And once they can do that, “Now we want you to walk 15 steps, three times a day.”
In our program, because it’s a three-week intensive program, we can push them a little harder. We’ll have them working on things like getting up at the same time every day, staying upright all day, going to bed at the same time every day and figuring out how to moderate effort.
From a cognitive perspective, one of the first things we’re going to say is these symptoms are real, they are absolutely getting in your way and the best way to help reduce them is to focus on all the other areas of their life. We’ll encourage them to get back to some hobbies, get back to some schoolwork, spend more time with their family. And try to start gradually replacing all that focus only placed on the symptoms to things like, Let‘s think about math homework, let‘s think about texting a friend, so their brain isn’t only spending time focusing on their symptoms.
MCP: Does the program have a nutritional component?
DR. HARBECK-WEBER: The most important nutritional component is to eat. We don’t focus so much on what micro-nutrients they need. We focus on calories for the body to heal, for the body to maintain wellness while being more active again. We ask kids to eat breakfast, lunch and dinner, and two snacks, no matter how they feel. We tell them, You‘re going to do what your body needs even if it‘s hard. This process has to happen gradually. You can’t take someone struggling to eat and say you’re going to eat three meals tomorrow. If we build too fast, then they don’t do so well.
DR. HARRISON: We see many individuals in our program who find it difficult to eat for a variety of reasons. After the medical workup is complete, regardless of symptoms or hunger, it is healthy to eat breakfast, lunch and dinner daily. If one were to rely on symptoms to tell you when you should eat, it gives those symptoms a lot of power. And then you’re really missing out on a lot of key nutrients. Skipping breakfast is one of the more common causes of chronic headaches and brain fog. Food is medicine. The goal needs to be to eat healthy, which in this case means getting individuals to eat three meals and two snacks every day.
DR. HARBECK-WEBER: You can see how someone with long COVID has a lot of fatigue. They sleep a lot, they sleep through meals, so eating is an effort and as a result, meals get skipped. We need to get them back to regular scheduled meals and snacks so they can get strong in their bodies and minds again.
MCP: How do you get families on board with the program and its goals?
DR. HARBECK-WEBER: By the time someone gets to us, parents are usually exhausted. They have already been dealing with these symptoms for a long time and maybe multiple people in the family have had COVID-19 too. Families are also worried about their kid, they’re anxious. From day one, we tell them we’re not asking them to do more, we’re asking them to do it differently. They’re already consumed with taking care of their young person so they are willing to do whatever it takes.
MCP: Is there any medication aspect?
DR. HARRISON: When we admit young people into the program, we test vitamin D and iron levels, as patients with chronic pain are often deficient in both. If they are deficient, we make recommendations for supplements to be taken on a regular basis. Some individuals have undiagnosed mood issues that can result from being socially isolated and unable to do the things they like doing. This becomes even more relevant in the setting of the pandemic. We start with getting them back into the swing of things in a gradual fashion via our program, which simulates a typical teen’s day at school. Oftentimes, simply becoming more functional may improve depression. In addition, we do have a child psychiatrist who will see a patient if the situation warrants it.
MCP: How do you factor in any preexisting medications being taken before entering the program?
DR. HARRISON: We see people who enter the program who are on a lot of medications. I may ask a patient why they’re on a certain pain medication and if it’s helpful and they’ll say, I don‘t really know. We work to stop or taper off medications that they have been taking for a long time if their benefits are questionable. We feel there can be a negative unconscious or subconscious connotation to taking medications. I caution the prescribing of many medications simultaneously for chronic pain. We only deprescribe a medication if it’s important for a patient’s progress.
DR. HARBECK-WEBER: By the time they get to us, the acute phase has passed. They have appropriately had medication during the acute phase. And potentially they tried lots of things that haven’t worked, which is why they’ve got to us. That’s the context for reviewing medications and contemplating deprescribing.
MCP: Has anybody with long COVID come through the program and not gotten better?
DR. HARBECK-WEBER: Everybody who had long COVID and came through our program to date has done very, very well. What that means is by the end of the program they are getting up at the same time every day, having a full active day, they’re spending time with friends, they’re doing our program’s schoolwork, they’re exercising every day, they’re eating well, they’re sleeping well. That’s our definition of success: that they are functioning again. They might still feel a little bit tired or have headaches, but they’ve learned how to keep living and functioning through the symptoms.
MCP: When the three-week program ends, is there a follow-up?
DR. HARBECK-WEBER: We hook them up with a therapist at home, a local professional who can help them maintain the program. And of course kids and their families are always welcome to contact us as needed.
DR. HARRISON: We have patients who come from every state in the country for the program and they’re with us full time, in Rochester, Minnesota, Monday through Friday, 8 a.m. to 4 p.m. Throughout the program, we do a lot of work to make sure their progress translates when they go home. What is so encouraging to parents is day by day, they see their kids becoming like themselves again, ready to attend school, enjoying socializing with new friends and taking part in physical activities. It doesn’t mean their symptoms are gone, it just means they’re coping in a different way.
DR. HARBECK-WEBER: I often say we have the best job in the world because we see kids with long COVID and other conditions who are really struggling when they come to us and when they leave they’re doing awesome. Parents will often say to us, I got my son back, I got my daughter back, so that’s very meaningful.
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