MS and COVID-19: What’s the Long-Term Impact?
We understand a lot more today about the effects of the COVID-19 virus than we did when it first appeared. While there’s still more to learn, research is beginning to come out about the long-term impact of COVID on people’s physical and emotional health, particularly in people managing a chronic condition like multiple sclerosis (MS).
If you or a loved one has MS, you may have questions. Does MS increase the risk of COVID-19 infection? What is long COVID and how may it affect people with MS? And how can we recover from all that time spent in social isolation? Here’s what we know so far about how the virus and the pandemic in general have impacted life with MS.
The Long-Term Impact of COVID-19 on MS and Its Symptoms
According to the National Multiple Sclerosis Society, simply having MS doesn’t increase your risk of getting COVID, unless you also have other factors (like being older, or taking certain disease-modifying therapies) that would increase the risk.
However, some people who have been sick with COVID may experience long-term effects that can last weeks, months, or even years. These include symptoms such as:
- Brain fog
- Sleep problems
- Dizziness or lightheadedness
- Numbness and tingling
- Chest pain
These lingering symptoms after COVID infection are known as post-COVID conditions or long COVID. If you’re living with MS, though, many of these symptoms may already be familiar to you as symptoms of MS. This overlap in the symptoms of MS and the symptoms of long COVID can make long COVID difficult to study in people with MS.
Still, some research has tried to answer the question about the long COVID experience in people with MS.
What Does the Research Say?
When it comes to the risk of long COVID in MS, one large study done in the U.K. suggests that people with MS have indeed experienced long COVID symptoms—and may be at higher risk for these persistent symptoms than the general public. This may be especially true for people with MS who had more severe neurologic impairment (damage to the nervous system) or mental health concerns before getting COVID.
And when it comes to outcomes, a smaller study done in Austria suggests that people with MS and COVID are at no greater risk for relapses or worsened disability than those without COVID. That means the researchers think that having COVID or long COVID isn’t likely to make your MS worse.
But the findings aren’t clear. With just a few studies, “there's a lack of quality data on long-term COVID outcomes in people with MS,” says Bruce A. Cohen, M.D., a board-certified neurologist and chief of MS and neuroimmunology at Northwestern University Feinberg School of Medicine in Chicago.
One main issue that currently interferes with understanding the relationship between long COVID and MS is that the two conditions share similar symptoms. Some research also suggests that respiratory infections (like COVID-19) can trigger a flare-up of old MS symptoms. But there’s no good diagnostic tool to help differentiate between long COVID and MS symptoms. This all makes diagnosing long COVID in people with MS more challenging, says Meghan Beier, Ph.D., a health and rehabilitation psychologist specializing in multiple sclerosis at the Rowan Center for Behavioral Medicine in Towson, Maryland.
Ultimately, “more studies are needed to draw specific conclusions and make clinical recommendations,” Beier says.
If You Think You Have Long COVID
If you think you’re experiencing long COVID, be sure to tell your doctor. “Some people with MS do not struggle to differentiate their post-COVID symptoms from their MS symptoms,” Beier emphasizes. Meaning, you know your symptoms best. Talk to your doctor about what you’re experiencing. There are often ways to help manage the symptoms, even if the root cause isn’t certain.
MS and Mental Health: The Long-Term Impact of the Pandemic
Getting sick with a viral infection isn’t the only consideration when it comes to the COVID-19 pandemic. Living through it has had a psychological impact on many of us, for better or worse.
“From a research perspective, the findings are mixed,” Beier says. Some people with MS report mental health challenges, while others say they feel no different or even better. “As a psychologist, I’ve also found this variance.”
Depression, Anxiety, and Loneliness
“The reality of COVID-19 is that it has hit us in a spot where humans really struggle: coping with uncertainty,” says Kevin Alschuler, Ph.D., psychology director and director of rehabilitation research at the Multiple Sclerosis Center at University of Washington Medicine in Seattle.
While uncertainty was a universal struggle for many, having MS may have complicated things even more. “People with MS have faced additional stressors, worries, and challenges, such as those that come with the heightened threats that COVID-19 poses for those who have more compromised health,” Alschuler says.
In fact, some research from 2020 suggests that the pandemic had a large impact on the psychological well‑being of people with MS. They were more likely to experience symptoms of depression, get worse sleep, and feel more fatigue compared to the general population.
And while social distancing was no picnic for anyone, “a portion of our MS population requires assistance from friends, families, and caregivers,” Alschuler says. “Social distancing and the risks posed by social contact had a disproportionate effect on this group.” Some people may have felt more lonely or extra stress from having to go it alone.
Connection and Resilience
Other people had a different experience. As Beier notes, “some felt more socially connected, because they were now connecting with friends, family, and employers virtually with more frequency than in the past.”
What’s more, life with MS tends to require a certain level of resilience that may have been beneficial throughout the pandemic. “Many [people with MS] have had to adapt to new life circumstances many times over,” notes Beier. “And while none of us would want this pandemic, it also has brought some opportunities to those with disabilities that didn’t previously exist—like [more] work-from-home jobs and virtual medical appointments.”
In fact, results from another study from 2022 found that people with MS generally did not experience mental health challenges related to the pandemic. Instead, they showed resilience and adaptability.
No matter your experience, know that it’s valid and many others with MS have likely felt the same way. And if you need support because of the pandemic’s impact, or for any other reason, reach out to a mental health professional.
Getting Back to “Normal” with MS
Today, with the help of vaccines, boosters, and antiviral treatments, COVID-19 may feel like less of a threat to the general population than it did three years ago. As a result, the CDC has loosened its guidance around mask mandates, social distancing, what to do if you’re exposed to the virus, and how long to self-isolate if you do get sick.
For those who’ve practiced extra caution during the pandemic, these loosened restrictions may feel concerning. However, “the first thing that people should realize is that they can control their risk to some extent,” Cohen says. “It’s important that people realize that they’re not powerless.” He recommends strategies like:
- Getting fully vaccinated and keeping up with vaccine booster schedules
- Taking steps to minimize risk factors that you’re able to address, like quitting smoking, or reaching and maintaining a weight that’s healthy for you
- Continuing to wear masks in public
You can still find ways to participate in what’s meaningful to you, too. “For those individuals who are concerned about exposure, there may be some opportunity for mitigating exposure without fully withdrawing from the world,” Beier says. “If someone is risking exposure, they might want to only choose activities that are in line with their values, that add to their lived experience.”
For example, if socializing is important to you, you may decide to have coffee with a friend in person. But you may also do delivery or curbside pickup for grocery shopping. That way, your exposure is limited but you still get the social support you need.
At the end of the day, it’s all about finding balance and doing what feels right for you. And if you’re worried about the toll the pandemic may have had on you, reach out to your support network and a mental health professional who can help you process.
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