July 18, 2024 – In 2021, Emma Javits, 35, thought she was going through a really, really bad depressive episode: She was barely able to get out of bed and do basic tasks. It took 3 years to figure out that her debilitating fatigue was due to long COVID, not just depression.
She had been working as a licensed clinical counselor, running weekly group therapy sessions at an intensive outpatient eating disorder clinic in Los Angeles before the pandemic and throughout its first year.
For Javits and many other mental health professionals, holding space for both her clients' emotions and her own was challenging as the world changed in what felt like the blink of an eye. Maybe her fatigue was from intense burnout, she theorized. As an essential worker, she was able to receive the first COVID-19 vaccine earlier than most, but she eventually contracted the Omicron variant of COVID in 2021.
She had struggled with major depressive disorder long before COVID came into the picture, which was treated with antidepressants. Fatigue was a pretty common symptom when her depression would creep up, but moving her body was always the antidote. Weekly yoga, high-intensity workouts, and cardio were her saviors. Even during her lows, she was still able to see clients and work out, albeit with a considerable amount of apathy and anhedonia – the inability to derive pleasure – which are often linked to bouts of depression.
“The fatigue felt different,” Javits said. “Every morning, it felt like I got hit by a truck, that’s how I described it.”
Exercise was no longer an option. Javits ultimately had to take months off from work. She didn't know it, but it was her long COVID symptoms that were hindering her body’s ability to move as it used to – but those symptoms only worsened her depression.
“Even in my depression, I had never had suicidal ideation. But I had it for the first time a year and a half ago,” she said. “I had lived a very able-bodied life, so I couldn’t imagine living a life and feeling like this every day.”
Teasing Out Symptoms
The list of long COVID symptoms has reached the hundreds, making it especially difficult for doctors to parse through each patient’s health profiles to determine what is coming from long COVID and how to treat it.
Lindsay McAlpine, MD, founded the NeuroCOVID Clinic at Yale Medicine in 2020. At the beginning of her work there, she would ask patients to fill out the usual standardized mental health assessment tools like the GAD-7 (General Anxiety Disorder-7) for anxiety and the PHQ-9 (Patient Health Questionnaire-9) that measures depression.
“Eventually, I just stopped. Everything would just come out pan-positive, and many of these people weren’t depressed,” she said. “There’s definitely distinct depression and distinct long COVID, but there’s also a significant overlap.”
Long COVID doesn’t just show up as one thing: You might have brain fog, fatigue, headaches, tremors, heart palpitations, issues with the stomach and intestines, sleep problems, depression, anxiety, and more.
But one of the most consistent syndromes McAlpine sees in her long COVID patients is chronic fatigue syndrome (CFS), which is marked by severe exhaustion that makes it nearly impossible to exert yourself mentally and physically.
Another sign of long COVID is post-exertional malaise, commonly found in those who also have CFS. Post-exertional malaise happens when someone has extreme fatigue 1 to 2 days after – rather than right after – performing basic tasks like brushing your teeth or simple forms of exercise like walking around the block.
And while it’s very important to address the mental health symptoms of long COVID, it’s also important not to jump to any conclusions. The psychiatric history of a patient is relevant, but not the whole story.
“Depression and anxiety are so common for these patients, so I make a note of it in my head. But so many long COVID patients have been dismissed and gaslit, so that’s not the first place I jump,” McAlpine said. “I’ve seen hundreds and hundreds of patients, and I can’t think of one where I was like, ‘Oh, this is just treatment-refractory depression.’”
Demystifying Long COVID and Depression
Researchers globally are still trying to figure out how to efficiently screen for, diagnose, and treat long COVID. But some studies have shown that the reduction of serotonin – a chemical messenger in the body that affects mood levels – is actually linked to long COVID. That could mean that the depression many long COVID patients face isn’t just a reaction to their fatigue and other symptoms, but rather a physiological part of the disease.
That’s why Fernando Carnavali, MD, a primary care doctor at Mount Sinai Hospital in New York City, thinks that every patient intake assessment from this point forward should include the question: Have you ever had COVID-19?
Research has proved that many of those with long COVID have mental health issues as part of their disease. This has happened in a significant percentage of Carnavali’s patients, he said. Still, he’s wary of doling out two separate diagnoses, rather than understanding depression as a symptom of long COVID.
“You can look at the patient’s entire history, but at one point, you need to ask, ‘Did you have COVID? Did it make any difference in your symptoms?’” said Carnavali.
An early screening for long COVID may have saved Emma Javits time, money, and pain. Like many other patients, it took years before she was able to get a long COVID diagnosis.
In Javits’s case, her doctor thought the fatigue might be a hormonal issue, so she recommended supplements. When that didn’t work, she tried transcranial magnetic stimulation (TMS) – a noninvasive procedure that uses magnetic fields to stimulate nerve cells – after which she felt a bit more clear-headed for a couple of days, but it didn't help with her debilitating fatigue. She sought out ketamine therapy, use of an anesthetic drug that in some clinical settings is given to help with treatment-resistant depression. It made her body feel relaxed but still didn’t address the fatigue.
After years of trial and error and independent research, Javits was finally able to accept that she might have long COVID, and she had her hypothesis confirmed by a doctor. For the past several months, she has been taking low-dose naltrexone, an opiate blocker that is typically used to treat substance use disorder but has recently been studied as a treatment for patients’ extreme fatigue after COVID.
“It’s almost been like a 180. I’ve noticed such a significant change in my energy and mood,” said Javits. She’s not back to her usual workout schedule, but she’s on her way there.
“Still, in the back of my mind, I think, ‘Am I ever going to feel normal again?’” Javits said. “What I’ve realized is that, if I can do 20 minutes of exercise a day, then that’s OK.”
