Long COVID Patients Band Together to Collect Data on this Little Understood Condition

Interview with Dr. Yochai Re’em, a psychiatrist in private practice in New York, conducted by Melinda Tuhus

Although the Biden administration officially ended the government’s Covid-19 pandemic national emergency in early April, Americans are still contracting the virus, being admitted to hospitals and dying – although in greatly reduced numbers.  But an estimated 10 to 30 percent of those who contract COVID worldwide are dealing with a syndrome the CDC has termed “Long Covid.” The condition is not well understood and it may be that health providers’ biases have held back research.

After it became clear that some people took much longer than others to recover from Covid, some individuals who had experienced Long Covid came together in the Patient-led Research Collaborative, including doctors, scientists, data analysts and more. In the fall of 2020, they conducted an international survey approved by an institutional review board so they could publish their findings. The Collaborative focused on collecting information on patients’ description of their symptoms.

One of the contributors to the Collaborative’s work is Dr. Yochai Re’em, a psychiatrist in private practice in New York. He was diagnosed with Covid in March 2020 when he was a psychiatric resident, near the beginning of the pandemic. It took him several months to recover and he now says he’s 99 percent better.  Between The Lines’ Melinda Tuhus spoke with Re’em about what the Collaborative has found in terms of the mental health impacts of Long Covid, and which demographic groups are most affected.

DR. YOCHAI RE’EM: So we all came together initially because the medical community was really focused on the acute illness understandably, at the time that I got sick. And so there was this whole group of people who acutely weren’t tremendously sick, most of us, and were continuing to stay not tremendously sick for much longer than anticipated. So that’s how the Patient-led Research Collaborative came to be.

MELINDA TUHUS: In your study, you found that more than 50 percent of respondents reported having at least one negative experience with a medical provider in the first several months of illness in which the provider was “harmful, dismissive, skeptical or apathetic.” Your study that I got is talking about the mental health impacts of Long Covid. How much do you think that kind of treatment would contribute to mental health impacts of Long Covid?

DR. YOCHAI RE’EM: It’s a really hard question to answer. The way that I think about it is there’s the virus itself, which can cause biological changes in the brain and those biological changes can lead to psychiatric conditions like anxiety, depression and sometimes even more significant ones like psychosis.

So there’s the biological part of it and then there’s the psychological part of it, which is a little bit of what we tried to get into in this paper.

The experience of having an illness that isn’t getting the attention that it deserves from the medical community. Having people in your family, your close friends not really understand what it is that you’re going through and then having your providers on top of that not really understanding and everyone around you telling you what you should be doing, how to approach it, what’s right and what’s wrong. It can really contribute to a lot of the psychological distress.

So I think it’s likely a combination of all of these things, the biology and the psychology that’s leading to some of the mental health ramifications.

MELINDA TUHUS: It’s almost 60 percent that didn’t have a negative mental health outcome. How does that fit into maybe assumption that Long Covid is psychosomatic. Your study is showing that it isn’t, right?

DR. YOCHAI RE’EM: You’re getting into a hotly debated territory. I think it’s very clear from all of the science that exists that it’s not a psychosomatic phenomenon by definition. So our study really just contributed to more theory in some psychosomatic illnesses that some maladaptive coping that is skewed in a way that doesn’t actually help you. t’s your body’s way of attempting to cope with something, but then acting in a way that just makes it worse. So there’s this theory that maladaptive coping can contribute to some psychosomatic conditions. So we did a cope scale in this study and looked at the different coping styles that people were utilizing.

And they were quite adaptive. I mean, it was coping styles where people were really actively using emotional support, instrumental supports and planning to really deal with the the illness. So that told us that it’s not an issue of coping that’s leading to the Long Covid in and of itself.

And then the question of how many people have psychiatric symptoms. That has less to do with the psychosomatic because the majority of people didn’t have psychiatric conditions using the threshold criteria that we used. But that’s a little bit different from whether the disorder itself could be thought of as psychosomatic. There’s a lot of data that shows that that’s not the case, but that’s not really what this study focused on.

MELINDA TUHUS: It also talked about the different demographic results that men are significantly more likely to be suicidal than women. Non-binary and gender non-conforming respondents were more likely to be anxious and suicidal than men and women. And people with depression, suicidality and anxiety were significantly more likely to be younger in the 18 to 29 year age range. And then finally, lower-income brackets were associated with higher levels of psychiatric outcomes. This is what you found, but is there any explanation for any of those differences?

DR. YOCHAI RE’EM: I think most of it isn’t surprising. If you think about marginalized communities, those communities that are more likely to experience less access to good quality healthcare and overall support, the more stressors you pile on, the harder it’s gonna be. So for the most part, it’s not surprising the idea that men had more suicidality to me was surprising because in general in psychiatry, it’s expected that women tend to have more suicidality and men tend to act on it more successfully. So I’m not exactly sure what to make of that particular issue, but the rest of it, I think in one way or another does make sense.

The idea that younger people are more likely to experience the psychiatric outcomes – some of my patients who are older who then have Long Covid, it’s sort of like they’ve gone through that mental process of having something in life pop up that’s a challenge and they’ve learned how to deal with it. So this is another one of those challenges. The younger ones, this is the first time that they’re struggling with something this significant that’s really impacting them. So it’s a different process.

For more information, visit the Patient-Led Research Collaborative’s website at 

For the best listening experience and to never miss an episode, subscribe to Between The Lines on your favorite podcast app or platform: Apple PodcastsSpotifyStitcherGoogle PodcastsAmazon MusicTunein + AlexaCastboxOvercastPodfriendiHeartRadioCastroPocket Casts,  RSS Feed.

Or subscribe to our Between The Lines and Counterpoint Weekly Summary. 

Subscribe to our Weekly Summary