What? Another New Normal? Long-Haul COVID-19 in People With MS

While the COVID-19 pandemic continues to linger on the heels of emerging variants, improvements in testing, treatments, and preventive measures have mitigated some public health concerns. Survivability odds are better, and people are more likely to avoid hospitalization in areas with established mask mandates and widely distributed vaccines. However, a new reality has emerged: long haulers.*

Some people with previous COVID-19 may now be dealing with their own “new normal,” facing a wide range of new, returning, or ongoing health problems that still linger months and months following recovery.

The long haul: Beyond the "new normal"

People with MS know all about the “new normal.” This phrase describes the personal acknowledgment we make when we realize that life after diagnosis isn’t going to resemble the life we had before, our lives are forever changed by MS. Yet, most of us move forward hoping today’s therapies can slow or halt the progression of this incurable disease. We:

• adjust to accommodations
• undergo therapies
• manage symptoms
• seek support
• reframe our identities

Accepting one’s "new normal" isn’t an easy transition, though it’s not all bad news. For instance, we may have lost mobility, employment, relationships, or access. But we may also enjoy unexpected gains: deeper friendships, a beloved service animal, satisfying new vocations, or more intentional self-care.

The long haul: Another "new normal?"

Life for people with MS may undergo yet another shakedown if they’ve survived COVID-19. Chances are, their previous “new normal” will be revised by the long haul. Long haulers are COVID-19 survivors who face a battery of chronic health problems in the wake of their infection.¹

Serious symptoms include:²

• damaged lung tissue causing persistent shortness of breath
• inflammation of the heart muscle leading to palpitations and rapid heartbeat
• kidney disease
• lost or distorted sensory perception (taste and smell) which can greatly alter appetite and lead to anxiety and depression
• chronic brain fog, fatigue, headaches, or dizziness
• a serious condition known as POTS (postural orthostatic tachycardia syndrome), which impacts neurological health and brings sleep difficulties
• lingering anxiety, depression, and PTSD
• type 2 diabetes risks

For long haulers, uncertainty lies in not knowing how permanent these new and often disabling symptoms might be, as researchers simply don’t know yet what to expect.

The long haul in people with MS

What does life now look like for people with MS who’ve joined the ranks of long haulers? A recently published research paper examined the toll COVID-19 has exacted on more than 1000 people with MS. They uncovered some interesting findings:^3,4

• 30 percent of nonhospitalized COVID-19 patients with preexisting MS experienced prolonged COVID-19 symptoms for more than four weeks, while 12 percent dealt with symptoms for more than twelve weeks
• long haul rates run higher for people with MS than in the general population
• COVID-19 infections may trigger MS relapses
• The use of DMTs (disease modifying therapies) may help reduce relapses triggered by COVID-19
• People with MS using DMTs face a lower risk for new neurological symptoms after contracting COVID-19
• More than 80 percent of COVID-19 patients with preexisting MS also experienced symptoms atypical to MS, such as: lung disease, high blood pressure, diabetes, and high cholesterol and triglycerides
• More women than men become long haulers

Research conclusions

Ultimately, the scientists concluded that people with MS face higher risks for the long haul. Any severe neurological or mental health concerns that preexisted before COVID-19 may also raise the risk for these and other symptoms. The researchers also highlighted the importance of vaccinations against COVID-19 for those with MS, as our community is vulnerable to long-haul symptoms. Drawing from related research, they also recommended careful, safety-centered decision-making regarding any alteration, introduction, or delay to DMT use.^3,4

The hope behind these findings is that, when MS specialists sit down with their long-haul MS patients, they can fine-tune individualized approaches to post-infection relapse treatment while at the same time improving their patients’ overall COVID-19 recovery.

Are you part of the long haul?

If you have MS and caught a case of COVID-19, you may worry about being a long hauler, regardless of your relapse status after recovery.

The best way to know for sure? Have open, honest communications with your MS specialist. They can help you with both your infection recovery and any relapses that may result. They can also help identify whether new symptoms are linked to long-haul COVID or signal a different emerging condition. Also, be open to discussing your current MS treatments as well as vaccine and booster options.

Will you need to redefine your "new normal" in the face of the long haul? Maybe, maybe not...but if so, remember this: you've been here before. Meanwhile, there's still hope that the long haul may be a temporary concern. Keep your fingers crossed.

*Also referred to as PASC (post-acute sequelae of COVID-19), post-COVID-19 syndrome, long-haul COVID, or long COVID-19.