Authors: Mayo Clinic Press Editors and Joey Keillor Women’s Health April 12, 2022

Caring for people with long-haul COVID-19 is helping to bring increased attention and legitimacy to conditions such as chronic fatigue syndrome and fibromyalgia, which are sometimes wrongly characterized as being “all in the head.”

Here, anesthesiologist, researcher and human performance expert Michael J. Joyner, M.D., of Mayo Clinic in Rochester, discusses how the health care community can better approach care for those with long-haul COVID-19 symptoms — and other chronic conditions.

Mayo Clinic Press: What symptoms are common in people with long-haul COVID-19?

Dr. Joyner: The symptoms are multifactorial. Some are more structural problems, such as feeling short of breath because the pneumonia associated with the COVID-19 has really damaged the lungs, in some cases damaged the heart. In addition, people with long-haul COVID-19 most often tell us that they have brain fog, fatigue, lightheadedness on standing up, and muscle aches and pains. Loss of taste and smell also can occur. It’s really important to separate issues associated with structural problems from the more generalized symptoms so that a person can be treated properly. If someone has problems with the heart and lungs that are leading to fatigue and difficulty with exercise and activity, there will be differences in how you treat that person versus someone with more-generalized sensations of fatigue and other problems.

MCP: I’ve read that chronic conditions such as chronic fatigue syndrome, postural orthostatic tachycardia syndrome (POTS) and fibromyalgia can be triggered by viruses. Is there a connection with COVID-19?

Dr. Joyner: The conditions you’ve mentioned are similar to long-haul COVID-19 in that they are often post-viral. That is, onset is after someone becomes infected with a virus. These conditions also have some symptoms in common with COVID-19. The fatigue, lightheadedness and brain fog associated with long-haul COVID-19 are not dissimilar to what we see with other post-viral or post-infectious disease syndromes.

MCP: We don’t know much about why long-haul COVID-19 is occurring. What should researchers be studying to understand the condition better?

Dr. Joyner: In order to get a handle on the constellation of symptoms in these people, we need to figure out whether the cause is an inflammatory, autoimmune or other process. There’s a big concern about widespread blood vessel (vascular) dysfunction, which could affect the kidneys, brain, heart — really all the organs in the body.

MCP: Over your career, how has the science related to chronic syndromes — and your own thinking about these conditions — evolved?

Dr. Joyner: About 20 years ago, I had a kind of “aha!” moment when I was studying postural orthostatic tachycardia syndrome (POTS) in collaboration with Dr. Phil Low, who is a world expert in the syndrome. It’s expected for the heart rate to go up a little bit, about 10 to 15 beats, when someone stands. But in people with POTS, the heart races from 60 or 70 beats a minute to 120 or 130 — nearly a doubling — with standing. Years ago, we thought that reaction was psychogenic, caused by the mind and not the physical body. When we tried to prove this, we found POTS is physiological. People with it don’t have enough blood volume and they have small hearts, and that’s why their heart races when they stand.

We also studied fibromyalgia and found that deep breathing was an effective treatment for it. Like POTS, it’s frequently labeled as psychogenic. People who have fibromyalgia are, unfortunately, frequently thought to be malingerers. But when you drill down, their symptoms are quite real. I think it’s really important to take these sorts of syndromes very seriously and try to understand what’s going on so that we can come up with countermeasures for people who live with them.

MCP: I’ve heard the term “medical odyssey” mentioned in context of COVID-19. What does that mean regarding long-haul COVID-19 or other chronic syndromes?

Dr. Joyner: A lot of people with chronic syndromes end up in a place like Mayo Clinic after they’ve been to 10 doctors and not gotten an accurate diagnosis. If they see a cardiologist, they’ll be told it’s their heart. If they go to an endocrinologist, then they’re diagnosed with something to do with hormones. A neurologist will say their symptoms are caused by the nervous system. These people get shunted off into what I would call various “swim lanes” of care. Their treatment isn’t coordinated because no one is looking at the whole picture in terms of the collection of symptoms they have and how they’re being dealt with. It’s an odyssey of looking all over for an answer to medical problems and not finding it. They can avoid that by coming to a place where care is coordinated.

MCP: You’ve also talked about avoiding the mistakes made over the years related to other chronic syndromes. What does that mean in relation to long-haul COVID-19?

Dr. Joyner: To avoid the medical odyssey situation, I think comprehensive clinics for long-haul COVID-19 need to be set up. Clinical care needs to be linked with good basic and lab science so that we can figure out what’s going on. People with long-haul COVID-19 also need maximum empathy and support because it’s very, very challenging for them.

MCP: In addition to being an anesthesiologist and a prominent researcher, you’re also really good at rallying smart and skilled people to tackle big enterprises. One of these enterprises — maybe even your biggest yet — was your key role in jump-starting, testing and developing a nationwide distribution effort for convalescent plasma therapy for those with COVID-19. Can you briefly describe what convalescent therapy is, and perhaps more to the point, the next level of community effort that was needed to pull this off?

Dr. Joyner: We drew plasma from patients who had recovered from COVID-19 — this is called convalescent plasma, which containes antibodies to the virus — and gave them to patients who were early in the course of the disease. The antibodies are little molecules in the bloodstream that we hoped would attack COVID-19. What we found is that people with COVID-19 who were treated with convalescent plasma sometimes had fewer symptoms and they often had a shorter disease course. If convalescent plasma is given early and in a high enough concentration, it likely reduces mortality.

We partnered with the federal government on what was supposed to be a convalescent plasma demonstration project involving 5,000 patients, and we ended up treating about 95,000 people with COVID-19. About 140 staff members at Mayo Clinic were involved, and we collaborated with institutions all over the country, including Johns Hopkins University, Michigan State University and Washington University in St. Louis, and others. Survivor Corps, a grassroots movement mobilizing COVID-19 survivors, was very, very effective in recruiting donors. We also worked with folks from the Orthodox Jewish community on the East Coast on recruitment and with blood banks to get people where they needed to be to donate plasma.

We looked at this from a management and supply chain perspective and had community engagement with our donors at a level that I’ve never seen before in four decades of practice. That’s one of the real positives from COVID-19. I hope we can keep that model going, and down the road, apply it to things like blood donation and participation in other forms of research.

MCP: One theme you’ve spoken of is the need for next-level community engagement when it comes to helping people with long-haul COVID-19. Can you talk about that?

Dr. Joyner: I think we need to make sure we engage with people with long-haul COVID-19 and find out what’s important to them, what problems they’re having, and what’s working for overcoming some of those problems. If we can do that, we can get a better understanding of the disease process. That will help us, as physicians and researchers, understand what’s going on with long-haul COVID-19, and I think it will make us much, much more productive. It will also make it easier for these patients to avoid the sort of medical odysseys that we’ve seen with other chronic syndromes. With an approach focused on engagement and outreach, I hope we can get to mitigation solutions for long-haul COVID-19 sooner rather than later.