{"id":18914,"date":"2020-10-20T11:05:35","date_gmt":"2020-10-20T16:05:35","guid":{"rendered":"http:\/\/thepapergown.zocdoc.com\/?p=18914"},"modified":"2023-03-21T14:45:24","modified_gmt":"2023-03-21T19:45:24","slug":"the-minds-of-covid-long-haulers","status":"publish","type":"post","link":"https:\/\/www.zocdoc.com\/blog\/healthcare-trends\/the-minds-of-covid-long-haulers\/","title":{"rendered":"The Minds of COVID ‘Long-Haulers’"},"content":{"rendered":"

The information included in this article was current as of publication, however, information changes rapidly regarding Covid-19 and may be out of date.<\/i><\/span><\/p>\n

\n

During her hospital stay, Heather-Elizabeth Brown received the same warning from one doctor after the next: Be prepared for mood swings. After spending 31 days on a ventilator to fight COVID-19, Brown, 35, was told she might become easily agitated or angered. \u201cSo many people mentioned it to me,\u201d she says, \u201cthat I first thought, ‘Am I going to be that bad?’\u201d<\/span><\/p>\n

The changes Brown was warned about started to surface about two months after she left the hospital. One day, Brown recalls, she asked her mom, who was caring for her, for a popsicle. Popsicles had become Brown\u2019s go-to treat when she first came off the ventilator and needed a feeding tube. \u201cThe only thing I could do was suck on ice,\u201d she explains. When her mom told her there weren\u2019t any popsicles left, Brown cried uncontrollably for 10 minutes. \u201cNot being able to get it for myself \u2014 in addition to it not being available even if I could \u2014 kind of did it for me.\u201d<\/span><\/p>\n

Heightened emotional reactivity isn\u2019t the only lingering mental-health effect of the coronavirus for Brown. She also has bouts of sadness and depression, and high levels of anxiety \u2014 especially about sleep: \u201cI’m always worried I will slip into unconsciousness again and miss another month of life.\u201d<\/span><\/p>\n

\u201cI’m different than I was before.\u201d<\/span><\/p><\/blockquote>\n

Brown, an ordained minister, has gone back into the hospital three times since her initial stay for COVID. Because she’s still recovering from the illness, she can\u2019t do many things that psychologists recommend to help manage her mental health. Her physical stamina is too low for exercise, for instance.<\/span> \u201cI don’t have full control over my own emotions,\u201d says Brown. \u201cI’m different than I was before.\u201d<\/span><\/p>\n

Marissa Oliver, a 36-year-old membership and event manager, can relate. She’s been “riding the COVID coaster\u201d from home since March 11. \u201cI’d start to feel OK for a few days and think I was getting better, so I’d go back to work. Then I’d have another horrific breathing attack and be back in bed for several days,\u201d she says. At first, the physical symptoms \u2014 lung pain, extreme fatigue, nausea, chronic constipation, chest tightness \u2014 were so intense, she didn’t have time to focus on her mental health. But after about two months, \u201cI started to realize my personality was changing,\u201d she says. Since having a panic attack in May, she\u2019s experienced uncontrollable anxiety about every two weeks, along with days-long periods of depression and grief.<\/span><\/p>\n

For several months, doctors told her just to rest. \u201cOne misdiagnosed me with anxiety and told me to go home and drink a glass of wine,\u201d Oliver says. Finally, in July, she got an appointment at the post-COVID center at Mt. Sinai in New York City. \u201cThey took my symptoms seriously,\u201d she says. After completing a pulmonary rehabilitation program, she’s now following a program to help regulate her autonomic nervous system and using an inhaler to reduce lung pain.\u00a0<\/span><\/p>\n

But the mental anguish continues, so she\u2019s working with a therapist who specializes in trauma care. \u201cI only feel hopeful when I don’t have [physical] symptoms,\u201d she says. \u201cAs soon as the symptoms come and worsen, my mood takes a turn for the worse.”<\/span><\/p>\n

Long COVID research<\/span><\/h3>\n

Brown and Oliver are far from alone. In April, the <\/span>COVID-19 Patient-Led Research Team<\/span><\/a> surveyed 640 COVID \u201clong-haulers<\/span><\/a>.\u201d Although the term \u201clong-haulers\u201d lacks a fixed definition, it\u2019s become a label for people who have \u201clong COVID,\u201d meaning those who take more than two weeks to recover from the disease, says Dr. Natalie Lambert, an associate research professor at Indiana University School of Medicine. <\/span>About 9 in 10 survey respondents said they experienced ongoing health issues after having COVID, and that their symptoms have changed over the course of their recovery. The most common mental symptoms were brain fog and concentration issues, reported by 70 percent of respondents.<\/p>\n

Other research paints a similar picture: Over half of respondents in a\u00a0survey of more than 1,500 long-haulers<\/a>, run by Lambert and the support group Survivor Corps<\/a>, said they had trouble concentrating or focusing, with about half reporting anxiety and one-quarter reporting sadness. And a recent study<\/a> found that 32 percent of COVID patients had a condition, encephalopathy, marked by altered mental function. These patients were more likely to experience worse medical outcomes and struggle with everyday tasks like cooking and paying bills.<\/p>\n

“I’ve forgotten to look both ways before crossing the street. It’s a very, very scary type of confusion.\u201d\u00a0<\/span><\/p><\/blockquote>\n

\u201cIt’s long, ongoing, confusing and incredibly demoralizing,\u201d says Hannah Davis, 32, who’s been sick since March 25. \u201cI lost all my executive functioning overnight. I started a fire because I was cooking something and forgot. I’ve forgotten to look both ways before crossing the street. It’s a very, very scary type of confusion.\u201d\u00a0<\/span><\/p>\n

Davis joined the Patient-Led Research Team, a self-organized group of long-haulers conducting their own research on COVID. The group is currently conducting a second survey focusing on mental health and the neuropsychiatric effects of long COVID with results expected in late October. \u201cI’m having a tangible impact on the world,\u201d she says of her decision to join the team. \u201cAlthough I would consider myself a mild COVID case, I don’t feel like myself at all.”<\/span><\/p>\n

Working on the “why”<\/span><\/h3>\n

While it\u2019s clear that neuropsychiatric symptoms are common among long-haulers, the \u201cwhy\u201d remains a mystery. \u201cWe need more data on how exactly SARS-CoV-2 enters the brain and whether the virus can infect neurons and other cells in the central nervous system,\u201d says Dr. Suzi Hong, associate professor of psychiatry and family medicine and public health at the University of California San Diego. In a <\/span>paper published in July<\/span><\/a>, Hong and other UCSD researchers proposed several ways the coronavirus might lead to mental changes.<\/span><\/p>\n

One possibility is that the virus invades the central nervous system, either via the olfactory system or by crossing the blood-brain barrier. \u201cA virus in the brain would lead to neuronal damage even without directly infecting the neurons themselves,\u201d Hong says.<\/p>\n

The effects could also be connected to the \u201ccytokine storm\u201d seen in some severe COVID cases. Cytokines are proteins that help regulate the body\u2019s immune response. It’s good for a COVID patient to mount a “swift and robust” immune response to the virus, Hong says, as long as the reaction is temporary.\u00a0<\/b>If the immune system overreacts, either the inflammatory cytokines or the activation of cells in the brain \u2014 or both \u2014 may have detrimental effects on the brain, she explains.\u00a0<\/span><\/p>\n

Plus, inflammatory cytokines outside the brain are associated with brain changes also seen in people with mood disorders, explains Mario Gennaro Mazza, of Italy’s Vita-Salute San Raffaele University. When Mazza and other researchers in Italy screened 402 adults<\/a> a month after being treated for COVID in a hospital, 42 percent and 31 percent reported symptoms of anxiety and depression, which were each linked to higher inflammation.<\/p>\n

There’s also evidence that the coronavirus infects gastrointestinal cells. Research supports a connection between gut and brain health, so some COVID researchers believe that SARS-CoV-2 first disrupts the microbiome, which then triggers changes in mood and cognition, Hong says.<\/span>
\n<\/span><\/p>\n

Lastly, immunosuppressive medications such as steroids are being used in some cases to control hyperinflammatory reactions to the coronavirus. There\u2019s <\/span>some<\/span><\/a> evidence<\/span><\/a> that these drugs can cause changes in mood, cognition and psychopathology.\u00a0<\/span><\/p>\n

Most likely, several things are at play, including the fact that anyone with COVID is facing a new disease with unknown short- and long-term consequences. \u201cSignificant psychological stressors such as fear of severe and unknown disease, loneliness, stigma and denial will undoubtedly contribute to widespread emotional distress and increased risk for psychiatric illness in COVID-19 patients,\u201d Mazza says.<\/span><\/p>\n

“Some people don’t believe you or they don’t check in. Others aren’t ready to accept the disability I have now.\u201d<\/span><\/p><\/blockquote>\n

As with everything coronavirus-related, more clinical research is needed to understand why this virus leaves its mark not only on the body but also on the mind. But amassing research takes time and money.<\/span>\u00a0<\/b>Long-haulers struggling to regulate their emotions and perform cognitive tasks can\u2019t wait for study results to roll in. They need help, or at least acknowledgement, now.<\/span><\/p>\n

Even if researchers can\u2019t prove these neuropsychological changes are biologically based, Lambert says we still need to take them, and any other lingering effects of COVID, seriously. Based on CDC data, <\/span>Lambert believes at least tens of thousands of Americans will be long-haulers. \u201cThe fact that so many people are experiencing distress indicates that we need to see this as a legitimate side effect of the virus and something that’s deserving of treatment,\u201d she says. Shifting the public’s mindset will help these long-haulers get treatment and non-medical support. \u201cThe disbelief they encounter from their employers and family members has financial and mental wellness impacts,\u201d Lambert says.\u00a0<\/span><\/p>\n

For now, most patients are finding support through therapy, as well as in online groups like Survivor Corps and Body Politic. \u201cOne thing that’s really hard is losing family and friends. Some people don’t believe you or they don’t check in. Others aren’t ready to accept the disability I have now,\u201d Davis says. \u201cThere’s so much love in the community and complete acceptance of who you are and what you’re capable of at any time.\u201d<\/span><\/p>\n

\n

Ready to book a doctor’s appointment? Visit Zocdoc.<\/span><\/a><\/span><\/h1>\n","protected":false},"excerpt":{"rendered":"

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