With Mental Health Concerns Often Ignored, Covid Long-Haulers Band Together for Research, Support
By Betsy Ladyzhets
When Paige Morrisey got COVID-19, her symptoms went beyond a cough, sore throat, chest pain and shortness of breath. She also experienced brain fog and other neurological issues. Taking two weeks off from her job at Trader Joe’s in Menlo Park, California, weren’t enough for her to recover, and her symptoms worsened over the next five months.
“We didn’t really know what was going on,” Morrisey recalled. She took more time off of work, stayed at home with her family, and, in early 2021, began seeking care at Stanford Medicine in Palo Alto. She met with a range of specialists from cardiologists to psychiatrists, but their care didn’t bring her closer to recovery. Some doctors didn’t believe the full extent of her symptoms, or suggested anxiety was the true cause.
“They assumed that I was kind of being hysterical,” she said.
Morrisey had been diagnosed with psychiatric disorders in the past, but she was certain the problem was bigger than anxiety. Like many other long COVID patients, her mental health had taken a serious dive, and she was experiencing depression, brain fog, neuropathy, and other symptoms linked to the condition.
She was diagnosed with POTS, a nervous system disorder common among long COVID patients that causes low blood pressure, lightheadedness and dramatic heart rate increases. It “made my heart rate 150 when I was just chilling,” Morrisey said. “That’s not anxiety.”
Paige Morrisey during one of several trips she made to Stanford Hospital’s ER during the early phase of her bout with COVID-19. Photo courtesy Paige Morrisey.
Morrisey grieved the person she’d been before getting COVID-19 – a healthy, young woman in her early 20s who loved to dance. Worse, the doctors she sought help from dismissed her complaints and suggested they were psychosomatic. She eventually found more helpful care outside the medical system, from other patients with long COVID.
Research has shown that long COVID can damage the brain, contributing to a wide array of neurological and psychiatric symptoms. For many patients, these effects are compounded by the fear and anxiety that comes from developing a chronic medical ailment – and trying to get care in a medical system that often trivializes medical complaints that aren’t well understood.
As a result, some long-haul COVID patients have become both advocates and researchers, forming research collaboratives to gather data and hunt for treatments. They’ve been joined by sympathetic specialists known as long COVID clinicians, who have set up medical centers dedicated to COVID-19 recovery in almost every state. Some of these clinicians are treating patients with a holistic approach, collaborating with other specialists and helping connect patients to each other in long-hauler support groups.
Cognitive issues like brain fog have received a lot of attention in stories about long COVID, but mental health symptoms are some of the most common. They’re also among the biggest concerns for the Patient-Led Research Collaborative, a group of long COVID patients who are also researchers in neuroscience, biomedicine, public policy and related fields. The group, which formed in early 2020, produced early and influential research about their condition. Their best-known paper – an international survey of about 3,800 long COVID patients published in The Lancet in the summer of 2021 – found that almost 60% self-reported anxiety and half reported depression.
COVID causes direct and indirect damage to the brain. It’s a toxin.”
— Alice Perlowski, cardiologist and long COVID survivor
A review of 66 studies from researchers at Aarhus University in Denmark similarly found that anxiety and depression were the most prevalent psychiatric symptoms. Long-haulers also often suffered from fatigue, sleep disturbances, and post-traumatic stress disorder (PTSD), the review found. And a May 2022 review of long COVID patients’ electronic health records by the nonprofit research organization FAIR Health found that generalized anxiety disorder was the seventh most common co-occurring diagnosis for long-haulers. Anxiety was more common for younger long COVID patients, ranking number 5 among 23-to-35-year-olds.
“COVID causes direct and indirect damage to the brain,” said Alice Perlowski, a cardiologist, long COVID survivor, and chief medical officer of the nonprofit Blooming Magnolia, which supports long COVID patients and their mental health. “It’s a direct toxin to the brain.”
Perlowski compared long COVID to getting hit by a car or going through chemotherapy. Researchers at the University of Oxford’s Wellcome Centre for Integrative Neuroimaging demonstrated this damage in a study comparing brain scans from 400 people who’d tested positive for COVID-19 with 380 who had not. They found major deterioration in the brains of the COVID-19 patients, including tissue damage and actual brain shrinkage.
The mechanisms behind this brain damage are not yet well understood – and that’s also true for the mechanisms behind long COVID in general. But scientists in this growing field have a few hypotheses, said John Baratta, a physical and rehabilitative medicine specialist and founder and co-director of the COVID Recovery Clinic at the University of North Carolina Chapel Hill. These include organ damage resulting from “direct viral toxicity,” reservoirs of coronavirus in the body that continue to replicate and wreak havoc, widespread inflammation triggered by the virus and an autoimmune response in which the immune system attacks itself.
The Vagus Nerve
Neurological symptoms may be linked to the effects of the virus on the vagus nerve, a cluster of nerves that connects to virtually all major organs and directs signals to the parasympathetic nervous system, which regulates major body functions like heart rate and digestion. Clinicians at University Hospital Germans Trias i Pujol in Barcelona, Spain, demonstrated the vagus nerve connection to long COVID in a study showing that, among about 350 patients, two-thirds had at least one symptom that could be caused by this nerve cluster malfunctioning. Their research was presented at an international meeting in April, though the study is ongoing.
Leigh Alexander, a physical therapist and long-hauler who treats long COVID patients, also sees the vagus nerve as a crucial driver of symptoms. When the coronavirus reaches the vagus nerve, she said, it can interfere with most major organ systems, leading to symptoms ranging from gastrointestinal issues to headaches and neck pain.
Doctors who treat long COVID often refer to the condition as a “vascular disease,” emphasizing that the body’s circulatory system and other organ systems are impaired in connection with each other. Baratta uses the term “syndrome,” explaining that long COVID “is likely caused by a patchwork of underlying mechanisms and causes quite variable symptoms.”
For some patients, anxiety and depression may be directly connected to the virus’ impacts on their brains, said Yochai Re’em, a New York City-based psychiatrist who also has long COVID. For others, these symptoms are more tied to the lifestyle changes required by this condition, or to the trauma they have experienced in the medical system.
But these aren’t separate groups of people, Re’em said. He hypothesizes that inflammation and vascular issues could contribute to psychiatric symptoms for some patients, though more research is needed to establish these connections. Lifestyle changes or trauma can “pile on top” of the biological factors, or can be “a separate phenomenon,” he said.
In all cases, Re’em said, long COVID leads to “a huge shift in how you approach your life.” People who were previously healthy with no chronic illness experience may suddenly find themselves “very, very unhealthy,” with little information about whether or how they might recover. This sudden shift leads patients to grieve the people they were prior to getting sick, similar to the way a cancer patient might feel after their diagnosis.
Long COVID patients and clinicians often emphasize that, although the condition includes mental health symptoms, it does not originate in patients’ heads. Good long COVID care, they say, begins with doctors who believe patients’ accounts of their symptoms and approach the condition holistically. But many patients, particularly those infected early in the pandemic, had opposite experiences.
Medical trauma, loss of support
Perlowski of Blooming Magnolia calls this “medical PTSD.” Patients who sought medical care for long Covid in early 2020 “were basically told to go home and come back if they couldn’t breathe,” she said. Such dismissals and failures to receive medical support were traumatic. Even patients who got COVID-19 later in the pandemic faced barriers to care, such as being told they had to provide proof of a positive PCR test or having clinicians dismiss their accounts of symptoms.
For Morrisey, painful experiences early in her time with long COVID led her to avoid medical settings later. She described a recent drive that took her near Stanford Medicine: “I drove by the emergency room, and I just started sobbing,” she said. “Even being in that vicinity is still painful.”
Sarah Ramey, author of the memoir “The Lady’s Handbook for Her Mysterious Illness,” said that while this type of experience may be new for many long COVID patients, it has a long history among people with other chronic or contested illnesses. She has lived with and written about such illnesses for years, and her book has become a resource for long-haulers struggling to navigate the medical system.
I don’t know anyone else who’s going through this. My husband is making me feel crazy. I feel like I’m failing at life, I’m failing my kids, and I don’t know what’s wrong.”
— Leigh Alexander, physical therapist, describing a patient’s experience
For some patients, it can be risky to tell a doctor that they feel anxious or depressed, Ramey said. Doctors may then focus on the psychiatric symptoms, which have established medications and treatments, rather than probing the deeper causes of the condition. “That is not what you do with cancer, right?” Ramey said. “We don’t say: ‘’This cancer patient is depressed or anxious, therefore let’s scrap the chemo and radiation and focus on (psychiatric medications).’”
As patients try to navigate treatment among providers who don’t believe them, they may also lose support from friends and family members who are similarly uneducated about long COVID. Alexander, the physical therapist, described one patient who came to her with a diagnosis of neck pain, but was clearly suffering from other neurological symptoms.
“The patient said, ‘I don’t know anyone else who’s going through this,’” Alexander recalled. “‘My husband is making me feel crazy. I feel like I’m failing at life, I’m failing my kids, and I don’t know what’s wrong.’” Alexander gave her a primer on long COVID – disclosing that she, too, has the condition – and helped the woman feel less isolated.
A lack of comprehensive research on long COVID may add on to mental health challenges, said Eric Topol, a prolific COVID-19 commentator and director of the Scripps Research Translational Institute. For example, the National Institutes of Health’s flagship long COVID study, which received more than $1 billion in funding, has struggled to recruit patients and has yet to release any significant results. “It’s just frustrating,” he said — especially for patients who have waited more than two years for treatment.
For Taylor Brune, who got COVID-19 working in a San Diego medical office in spring 2020, long COVID was her second experience with a chronic illness: She was diagnosed with chronic Lyme disease 10 years earlier. COVID-19 “brought me out of Lyme remission,” she said. On top of the physical symptoms, she went through a second round of grief and anxiety around her health issues.
“I lost almost everyone when I first got sick (with Lyme), so I had to rebuild my relationships,” Brune said. This time, when her health declined, she got support from newer friends who knew of that past experience, as well as from the broader long COVID community. She also had tools to manage the condition and remain hopeful.
Community and peers in long COVID care
In a traditional medical setting, a long COVID patient might be bounced around between doctors with different specialties – and none of these specialists would communicate with each other. A more effective approach, patients and clinicians told MindSite News, is interdisciplinary, treating patients’ minds and bodies simultaneously.
That’s the approach taken by UNC Chapel Hill’s COVID Recovery Clinic. “Physical symptoms such as pain, fatigue, dizziness can be very troubling emotionally as well,” said Kate Cardoza, a social worker at the clinic. “And something like depression can also increase feelings of fatigue.” As a result, the clinic seeks to treat patients’ physical and emotional pain at the same time.
Long-haulers in support groups “have felt that sense of belonging to a community to be such an important part of their recovery process.”
— Yochai Re’em
This clinic also fosters collaboration through a “panel evaluation” offered to long COVID patients with more severe symptoms, said Baratta, the clinic’s co-founder. In this evaluation, a patient is seen at a single visit by six specialists, who develop a coordinated care plan. This “encourages collaboration and discussion among providers, which is not frequently done in such a fragmented healthcare system as the U.S. has,” Baratta said. As of mid-June, about 125 patients have gone through this kind of evaluation, out of 1,100 patients treated at the UNC clinic since it opened.
The UNC clinic also offers patients an eight-week course that teaches them about the mind-body connection and offers strategies for managing symptoms. Across the country, the University of Washington’s long COVID clinic and the VA Puget Sound Health Care System jointly offer a similar group course – six once-a-week sessions, followed by two monthly sessions.
“We use a biopsychosocial model to think about patients’ symptoms and to really explain those symptoms,” said Lindsey Knowles, a rehabilitation psychologist who works at the University of Washington clinic and helps run the sessions. Patients learn to understand and respond to symptoms, to manage their energy and to better communicate with their doctors. The clinic has run 12 groups since summer 2021, each with eight to 10 patients.
This kind of group care, along with online support groups like Body Politic, help patients connect with each other and feel less isolated. Long-haulers in support groups “have felt that sense of belonging to a community to be such an important part of their recovery process,” said Re’em, the psychiatrist with long COVID. Support groups have been particularly meaningful for patients who got sick early in the pandemic, before long COVID was well established in the medical community.
Re’em noted that some long-haulers might find support groups overwhelming and could prefer one-on-one therapy. He’s also found some patients “have really benefited from medications in small doses.” A handbook for treating myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients with low doses of SSRI medications, written by psychiatrist Eleanor Stein, may be a useful model for long COVID care, he said. ME/CFS is a chronic illness that shares many symptoms with long COVID, and is sometimes co-diagnosed in long COVID patients.
In addition to collaborations between specialties, long COVID clinicians and researchers also find greater success when they closely partner with patients themselves. “At least in our center, you can’t conceive of a project without patients involved,” Topol said. Listening to patients’ needs and concerns may be particularly key for chronic conditions like long COVID, as many patients have lost trust in the medical system due to past traumatic experiences.
Stanford opened a long COVID clinic in spring 2021, but its launch came after Morrisey’s experience at the health center. She personally found recovery through a regimen of diet, meditation, and mindfulness practices recommended by other long haulers.
Some long COVID patients require tangible support to improve their mental health. To meet this need, Blooming Magnolia gives direct grants, helping patients access healthcare, pay rent and buy food. “A lot of these patients have lost their jobs, they’ve lost their homes,” said Shelby Hedgecock, the nonprofit’s founder. “We want to be able to help them however we can.” Social workers at long COVID clinics can often connect patients with financial resources as well.
Blooming Magnolia also offers a support group and mental health resources, including a partnership with Cerebral, a provider of virtual mental health care. Hedgecock began focusing on mental health after a long-hauler friend committed suicide last year. Maya McNulty, a long COVID advocate and support group organizer, thinks a suicide hotline specifically for long-haulers may be one way to address the high rate of suicidal thinking among long COVID patients. “There’s many people that don’t have a support system,” she said.
Morrisey felt suicidal early in her time with long COVID, she said. But once she found a community with other patients and began working to shift her lifestyle, she saw improvement. She’s now living in San Francisco in her own apartment, working full-time while managing continued POTS symptoms. “Once I started to feel peace, calm, and hopefulness,” she said, “that sped up my recovery, too.”
Betsy Ladyzhets is a data journalist and science writer based in Brooklyn, who runs the COVID-19 Data Dispatch, a publication on tracking the pandemic.