Q: One thing that stood out 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?
A: “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.”
Q: 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?
A: “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.”
Q: Why do you think this exhaustive review was needed?
A: “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 coauthors, 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.”
Q: What impact do you think the new long COVID review in Nature will have?
A: “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.”
Q: What’s the take-home message for physicians?
A: “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.”
Q: What’s the big picture: How significant is the public health crisis that long COVID represents?
A: “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.”
Q: What are the main challenges in combating long COVID?
A: “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.”
Q: Any advice you’d give to someone with long COVID today?
A: “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.”
A version of this article first appeared on Medscape.com.