Q&A With Long COVID Patient, Researcher: Treatments Lagging as Cases Rise

Editor's note: Find the latest long COVID news and guidance in Medscape's Long COVID Resource Center.

For Julia Moore Vogel, PhD, a cup of peppermint tea marked the moment her life would change forever.

One morning in early July 2020, she took a sip of her favorite strongly flavored pick-me-up and couldn't taste it. She knew loss of taste and smell were symptoms of COVID-19, and she suspected she had contracted the virus. A doctor's visit confirmed her fears.

"I remember trying the tea and just being so shocked and thinking: How can this be happening to me?" says Moore Vogel, a COVID-19 researcher with the Scripps Research Translational Institute in San Diego. "I'd been so incredibly careful."

Her physician assured her that as a healthy woman in her mid-30s, she'd be "back to normal" in 2 weeks' time and that her loss of taste and smell "very likely will be your only symptom," she recalls.

But within a week, Moore Vogel started having trouble breathing. She couldn't work, and she experienced crushing fatigue, brain fog, and migraines. Now, 2½ years later, Moore Vogel is among the tens of millions of Americans with long COVID.

As a COVID-19 patient-researcher who still struggles with fatigue and migraines, she has learned to cope with her condition. She directs the Participant Center for the All of Us Research Program, a National Institutes of Health collaboration to build the largest, most diverse health database in history. She relies on a practice called pacing, which helps conserve physical, mental, and emotional energy, to avoid making her symptoms worse.

And she is a co-author of a landmark 200-study review of long COVID published January 13 in the journal Nature, with Scripps Executive Vice President and Medscape Editor-in-Chief Eric Topol, MD. Two other institute long COVID researchers and patient advocates who have the condition co-authored the review ― Lisa McCorkell and Hannah E. Davis, cofounders of the Patient-Led Research Collaborative , a group of long COVID patients who study the virus.

Moore Vogel discussed the key findings of the new review and her personal experiences with Medscape Medical News.

When you contracted COVID, no treatments or vaccines existed. Can you talk about what the experience was like for you?

"It was July 2020. The loss of taste and smell was the first symptom, and what was interesting was that was my only symptom for a little bit. Being the goal-oriented, work-oriented person that I am, I just worked the rest of the week and hoped that it wasn't real.

"But that was a Wednesday, and by Friday, I was just getting really tired, and it was really hard to finish my workday. I ended up taking 3 weeks off to recover from the acute phase. At the time, I had read early discussions about long COVID, and it was always on my — how long was it going to take to recover?"

You went to see a doctor that first week?

"I called them when I had the loss of taste and smell, and they said, 'It's very likely this will be your only symptom.' And when I first talked to a physician, they were saying, 'Oh, you're young and healthy, in 2 weeks you'll be back to normal.' But of course that turned out not to be true.

"It's hard to remember what it was like at that time. There were so few treatments, it was all about rationing ventilators, and it was absolutely terrifying at the time to just not know what was going to happen."

How are you managing your condition today?

"I have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), one of the really common diagnoses that come out of long COVID. So, that's the biggest thing for me to manage now, and the main management is pacing.

"I also have medications for migraine management. I've always had some degree of migraines, like two a month, but now it's like 15 a month, so it's a totally different scale of management."

It must be frustrating, personally and professionally, that long COVID treatments remain elusive.

"I'm disappointed at the pace of testing things in clinical trials. There was so much progress made, so much innovation in the early stages of the pandemic to treat the acute phase, and it led to amazing things. We have all these monoclonal antibodies, the steroids are really effective, not to mention the antivirals and the vaccines, of course, on the prevention side. It's been amazing.

"But for some reason, long COVID treatment is really lagging. What I hypothesize as part of the reason for that is that it doesn't feel as dramatic. When you see someone on a ventilator or hear about death, it feels very dramatic, and people really worry about that."

So, let's talk about the research. How did your personal experiences — and those of the two other co-authors with long COVID — help inform this review?

"I work with Eric Topol on a regular basis, and it was amazing that he invited patients to work with him on this review.... I have to say of my other long COVID patient co-authors, Hannah Davis and Lisa McCorkell, it was amazing to work with them.

"It was my first time working with people who have long COVID on a big project. The understanding that we had of each other [where] one of us might say, Oh, I'm crashing today, I can't work on this. Can you help get us across the finish line for this deadline? That was really amazing to me in terms of how a workplace can be with real disability accommodations.

"It's really changed my personal outlook on how important it is to have patients involved in the process."

What was the most surprising or significant finding of the review, in your view?

"I would say the most impactful thing to me in the process of writing this review is how much research has been done in such a short time. We started with over 250 studies that we wanted to reference in the review, and we actually had to cut out 50 in the editorial process, which was really hard!

"There's just been so much progress that's been made in the past couple of years. And then thinking about the progress on long COVID in general, the other things that's important to acknowledge is all the work that's been done on other post-viral illnesses that present very similarly to long COVID in many patients, ME/CFS and postural orthostatic tachycardia syndrome (POTS)."

One thing that stood out to me is the review's finding that long COVID is potentially lifelong COVID and, in some ways, is closer to HIV-AIDS than, say, influenza. Is that right?

"Yes. I'm really glad you took that point away from the review because that was one of the things that I felt the most strongly about incorporating. For many people, based on the treatments that we have today, this is likely to lead to lifelong disability. And that's something, from my personal experience, for sure. I'm seeing no improvement on the horizon.

"That's part of why I'm so passionate about there being clinical trials because I know there are millions and millions of us. So for me, that wasn't so surprising, because I'm living it, but I can see how for the general public that was a really surprising finding."

The review breaks down long COVID's effects on various organs/systems, and it includes the most comprehensive look to date at the effects on pregnant women. Anything you'd care to stress about that?

"It really underlies the importance of vaccination, given that it can affect both the pregnant person and child. There is early evidence of development delays if there's infection while the child is still gestating. So, I think it underscores the need for vaccination to reduce that risk.

"You know, pregnancy is a stressful and terrifying time anyway. So, if there's anything you can do to reduce the risk to yourself and your unborn child, I think it's really worthwhile."

Why do you think this exhaustive review was needed?

"Because of the massive amount of literature that's out there, it's so hard for anybody to sift through. Eric Topol and Hannah Davis, two of the co-authors, are two people who have done it, and they keep up with all the literature, and they are always tweeting about it.

"But most people don't have the time to be able to sift through it, so what we did was take all of that literature, organize it into sections, and summarize the key findings. Then the other thing that I think is really important for the field right now is the recommendations piece."

What impact do you think the new long COVID review in Nature will have?

"The response to our review is way beyond what I expected, and I think that's in part a sign that there is growing awareness of the issue of long COVID.

"I hope that helps spiral toward more treatment trials. Because there are a lot of great candidates out there. We have a whole table in the review about the different potential treatments that should be tested."

What's the take-home message for physicians?

"One of the key recommendations is about physician education. We know that it is so hard for physicians to keep up with this massive amount of literature, and we really need more physician education that's meant for busy physicians who really don't have time to read all of the primary literature themselves.

"So many folks are not getting the care that they need. Because these types of conditions haven't been seen as much by primary care providers, physical therapists, etc, there's so much more education that's needed.

"I think the basic tenets probably could be taught in a weekend course, [including] listening to the patients, believing patients. There are so many times patient symptoms are [dismissed and not] really being taken seriously by their physicians.

"I think part of the challenge behind that is the conflating of mental health issues with these other physiological symptoms. There's a tendency to say, 'Oh, all this is this caused by mental health issues and that mental health is the root cause,' when actually it's the illness that's the root cause."

What's the big picture: How significant is the public health crisis that long COVID represents?

"I believe it's a massive crisis, a massive emergency. A lot of people in the long COVID community are calling it a mass-disabling event. There is concern that if we let the pandemic run unmitigated for long enough — given that we expect about 10% of folks that get COVID will end up with long COVID — we could end up eventually with a majority-disabled society.

"That would be devasting — to individuals, to the economy, the medical system. So, it's absolutely a public health emergency in my view, and that's part of why I've been so surprised by the lack of trials, the lack of awareness in the public. There hasn't been as much public education about long COVID as there has about acute COVID. I think we can do more from a public health perspective."

What are the main challenges in combating long COVID?

"I think the lack of treatments is the most devastating part because it's such a hard disease to contract, and there's no end in sight, and so that time horizon can be really difficult. That's part of why I'm pushing the treatments so much, because I want to offer hope to the community, you know, I want there to be hope around the corner.

"My hope is that within 5 years we'll have treatments that can really improve quality of life for the community. And I know that that may seem like a long time for those who are suffering, and I hope that there will be some clinical trials of treatments that improve symptom management within 1–2 years. But I think for really more novel things, it's really going to take at least 5."

Any advice you'd give to someone with long COVID today?

"Connecting with others that are going through the experience is extremely valuable and can really help with that mental component which can be really draining.

"The other thing, in terms of what's important for the lives of people who are living with long COVID, I would say to everyone who doesn't have long COVID but knows someone who does, being able to offer support is crucial and can make such a difference in quality of life.

"It is really crucial, for those who don't have long COVID, to take it into account when you're making your risk calculations. When you're thinking: Am I going to wear a mask here? or Am I going to go to that bar?

"Really consider the possibility that if you get COVID, you have a 10% chance of getting long COVID. And if you get long COVID, you have a 25% chance of not being able to work anymore or being so ill that you can't work anymore and you may lose your health insurance.

"The compounding effects are absolutely devastating, and I think that's under-factored-in to the general risk calculations of the public."

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Credits:

Lead image: Getty Images

Image 1: Scripps Research Translational Institute

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Cite this: Q&A With Long COVID Patient, Researcher: Treatments Lagging as Cases Rise - Medscape - Jan 25, 2023.