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Though she was vaccinated as soon she could be, and painstakingly careful about her interactions, Helene — an entertainment publicist whose job (in non-pandemic years) takes her around the globe — still contracted COVID-19 in June. She calls her respiratory symptoms “very mild,” and says she bombarded her weakened immune system with probiotics and immune boosters. Still, she laments, “the energy shifts and depression have lasted for months.” 

When I spoke with her in mid-September, Helene says she is feeling better, but adds, “When I say I am better today, I mean I haven’t cried yet. It’s 1 p.m. — could still fit in a weeping spell this afternoon.”

She isn’t alone.

Recent studies have shown that a third of “long-COVID” patients have been diagnosed with neurological and/or psychological symptoms including anxiety and depression, and, depending on the severity of their course of treatment, even PTSD and other psychoses — some six months or more after they contracted the virus. 

First celebrated in 1992, the World Health Organization’s World Mental Health Day takes place on Oct. 10 as a means of raising awareness of mental health issues around the globe and mobilizing efforts in support of mental health. And for a second year, the world is focused on COVID-19. Its resurgence and related symptoms and stressors seem endless and leaves doctors and health care experts challenged to sort through a web of their patients’ physical and mental health issues, and evolving research, to determine the true source of those symptoms and how best to offer relief.

According to Dr. Rahul Nanchal, a critical care specialist at Froedtert Hospital and a professor at Medical College of Wisconsin, the statistics bear out here in Southeast Wisconsin.

“A wide variety of people, including those who are only mildly symptomatic during index infections, are developing lingering manifestations,” Dr. Nanchal says. “Fatigue, anxiety and depression seem to be common. Whether these symptoms are from lingering effects of COVID-19, pandemic stressors or because of effects of other lingering symptoms such as exercise intolerance and easy fatigability is not yet clear.”

Little really is.

“It is important to recognize that there are two main points to make regarding COVID-19 and neuropsychological symptoms,” says Dr. Erin O’Tool, a family medicine physician with Ascension Medical Group Wisconsin, which created the state’s first post-acute COVID care clinic in Oak Creek in November 2020 and has helped hundreds of patients improve their quality of life. “The first is that infection from COVID-19 seems to directly affect the nervous system, namely through a dysregulated inflammatory response. This inflammatory response is presumably what triggers some of the symptoms, such as headache and cognitive dysfunction, and could potentially lead to more protracted dysregulation such as attention deficits, depression and anxiety.

“The second is that the last 18 months have been exceptionally challenging on many levels beyond the direct effects of the virus,” Dr. O’Tool continues. “The interplay between the neuropsychological and the social determinants of health — psychosocial, economic and so forth — are many. To put it simply, fear and stress related to COVID-19 and how it has and will affect our everyday decisions is also very real and likely contributory to symptom persistence.”

Helene can attest to this observation.

“It’s been such an interesting experience,” she says, noting that a recent breakup and the conclusion of a work project also left her feeling low. “Energetically, I felt everything around me.”

Then she shares something experts say is critically important to an optimal outcome. “In the past I would have kept this all to myself,” Helene says, “but my filter broke and I’ve not been able to pretend I’m fine. I’ve learned that telling people my experience and being authentic has given them the space to also ‘not be fine.’ I’ve also learned who can’t handle me when I’m vulnerable.”

Here, Nanchal and O’Tool share more about the long-COVID experience in terms of mental health and what ongoing research and treatment may offer.

What symptoms are most prevalent in the long COVID patients you see?

Dr. O’Tool: The most predominant symptoms for long-COVID — or post-acute sequelae of COVID-19 (PASC) as it is officially termed — continue to be fatigue, headache and cognitive dysfunction. Explicit descriptions of anxiety and depression are less common, although still described. More significant psychiatric disturbance, like acute psychosis, is much more rare and often associated with severe illness and hospitalization.

One of the issues with this virus that continues to surprise us is how unpredictable the course of illness can be and who is affected. This goes to both the cardiopulmonary [relating to the heart and lungs] and gastrointestinal effects, as well as the neurocognitive. The majority of patients that we see were only cared for as outpatients, so by definition they had mild or moderate disease that didn’t require more aggressive interventions or hospitalization.

In the case of seniors who may have already been exhibiting signs of cognitive decline when they were infected with COVID, might that be exacerbated in a way that may not prove temporary? Or is there a chance that some lost cognitive function may eventually return?

Dr. O’Tool: This is a very interesting question and an active area of research. There is concern that the inflammatory cascade that is initiated with COVID-19 infection could result in “kicking off” dementia pathologies or lead to more permanency of cognitive changes, but that concept is still very much in its infancy and, again, actively being studied to further clarify the true long standing effects.

A prominent symptom of COVID is the loss of taste and smell — two senses key to truly enjoying life. Even if people are experiencing no other long COVID symptoms, can this dramatically impact their mental health, both in the short and long term?

Dr. Nanchal: The short answer is yes. These and other lingering symptoms may impact neuropsychological health. This forms a vicious cycle, and we have evidence for this in other disease states such as sepsis. 

Dr. O’Tool: One can assume that the deleterious effects on smell and taste for some people could cause dramatic effects on their mental health. It is a bit relative, however, both due to the degree of functional sensory loss, but also on how much one depends on the senses specifically. For example, I have a couple patients who are area chefs and are incredibly frustrated because it doesn’t just affect their ability to enjoy food, but it affects their ability to work. Clearly, it can result in mental anguish, but it can be so much more as well.

Are you seeing long COVID patients who are also struggling with the idea that they might have also infected loved ones — or been infected by loved ones — contributing to depression, anxiety or worse?

Dr. O’Tool: This is most certainly a concern for patients with long COVID, but, obviously, it is not unique to them. There is quite a bit of concern, stress and fear in our community about what personal infection may mean to us and our loved ones, be that a grandmother that lives with us or a 4-year-old son who has asthma. At times there is resentment as well, when persons are infected despite doing their best to follow guidelines for infection control. 

That said, for those who suffer from long COVID there does seem to be a degree of rumination, which is then coupled with anger or sadness, and may exacerbate symptomatology. 

Can some loss of cognition potentially also be attributed to medicines and/or other forms of treatment?

Dr. O’Tool: This brings up two very important points for both acute and long COVID patients. 

First, there is very little that is currently available for use as medication for COVID-specific treatments, and ALL of them are for moderate to severe acute illness. There’s a lot of information available on the internet pertaining to potential treatment options with herbal or vitamin supplements, repurposed medications, or a combination of medications, that to date have little or no data to support their use. In addition to a lack of supporting data comes risk of unforeseen complications and consequences.

The second point is that there are some circumstances where medication side effects [on cognition or otherwise] may be expected and accepted because of the other benefits that are delivered.

This is often a weighted decision between patient and their health

care provider as to what the best options are when there are often few options available.

Recognizing it is a complicated effort, how are you supporting long-COVID patients with ongoing mental health concerns? How can family members, friends and other caregivers also support people in this sort of recovery?

Dr. Nanchal: A holistic approach is needed, including support groups, peer support, family support and mental health therapy. 

Dr. O’Tool: We have taken a multidisciplinary approach to long-hauler concerns for mental health — more specifically, working with patients and our colleagues to provide not just pharmaceutical options but individual psychotherapy or group therapy options, speech and physical therapy options to help address the cognitive dysfunction and fatigue that are often present, and our neurology and neuropsychology providers when specific testing is needed. 

For families, friends, caregivers and even employers, work toward having an open mind and be active listeners. Patients with long COVID often may not look exceptionally ill at first glance. It is less obvious than if they had casts on their arms and legs because of broken bones. Yet oftentimes their experience is just like those who have a more clear injury: It’s a time of dysfunction, adaptive behavior, and starts and stops in their recovery. They need the support to help get back to their normal level of function.

Is there anything else you’d like to share about long COVID symptoms, their causes and treatments?

Dr. O’Tool: COVID-19 and all of its manifestations and ramifications has created a confusing clinical scenario for medical treatment in the context of a complicated psychosocial dynamic in the community. Our understanding of the virus is evolving daily. Our world is evolving to respond. We don’t know what the long-term consequences of infection may be. As such, the best way to avoid these consequences and to not get long COVID is just to not get COVID-19 in the first place. To do that, we need to work together to mitigate the spread of disease through appropriate behavioral interventions, vaccination and masking. MKE