Understanding complex medical conditions is a vital element of effective patient care. The latest entry in our free CE webinar series for nurses sparked a meaningful Q&A session on Long COVID-19, shedding light on its symptoms, diagnosis, and treatment options. Here are some of the top questions, answered by Candace Pierce, DNP, RN, CNE, COI.
Related CE course for nurses: What is Long Covid? Diagnosis and Management
Q: Are funds still available to study Long COVID-19
A: Yes. The NIH’s RECOVER Initiative continues to fund Long COVID research through FY 2029. In December 2024, NIH approved an additional $147 million, part of a total of $662 million allocated specifically for Long COVID observational studies, pathobiology research, and clinical trials through 2025–2029.
At the same time, the Office of Long COVID Research and Practice (OLC) under HHS continues coordinating research, although cuts to the office and federal budgets have raised concerns about future direction. While NIH continues its funding via RECOVER, there have been recent federal funding cuts and even the closure of the Office for Long COVID Research. This may limit coordination and expansion of research efforts. So, although core grants remain secured, shifts in priority and reduced CDC involvement could impact long-term support and the launching of new programs.
You can follow current initiatives through the RECOVER COVID Initiative here: https://recovercovid.org/funding.
Q: Is there a link between vestibular neuritis and Long COVID-19?
A: Providers have occasionally reported vestibular neuritis (VN) after a SARS-CoV-2 infection or COVID-19 vaccination. This might happen due to inflammation, reduced blood flow, or even viral reactivation. However, long-term effects on hearing and balance aren’t consistently documented, and it’s still unclear if there’s a direct link between VN and Long COVID.
Q: If Long COVID-19 mimics many other diseases- where do you start? Rule out other conditions first?
A: Long COVID can show up with a huge range of symptoms. Over 200 have been reported, including fatigue, brain fog, pain, and dizziness. These can overlap with other conditions like fibromyalgia, ME/CFS, or other systemic disorders, which makes things tricky. The usual approach is to start by ruling out other common conditions like thyroid issues, heart or lung disease, or anemia. From there, Long COVID is typically diagnosed by looking at a history of confirmed or suspected COVID infection, symptoms lasting more than 3 months, and ruling out other possible causes.
Q: Can episodes of fatigue persist for several years after having COVID?
A: Yes, fatigue can stick around for years after having COVID. A meta-analysis found that two years after infection, 28% of COVID survivors were still dealing with fatigue, along with cognitive issues (28%) and pain (8%) (Fernandez-de-Las-Penas et al., 2024). There are also stories in the news about people struggling with severe fatigue and other symptoms even five years later.
Q: What type of physician is appropriate for managing Long COVID?
A: Since Long COVID-19 affects so many different parts of the body, a multidisciplinary approach is really the way to go. Start with a primary care doctor, like someone in internal or family medicine. Depending on your symptoms, you might need to see specialists like neurologists, cardiologists, pulmonologists, rehab medicine doctors, or even infectious disease or immunology experts. There are also Long COVID clinics that bring together teams of professionals, often led by a rehab medicine or neurology doctor, which can be a great option for more coordinated care.
Q: Does Paxlovid help at all with Long COVID?
A: The best thing to do is look at the research that is continuing to be disseminated. There are mixed answers to this question.
- A Lancet Infectious Diseases Phase 2 (PAX‑LC) trial found no significant benefit from a 15-day Paxlovid course for Long COVID symptoms in aggregate. https://medicine.yale.edu/news-article/does-paxlovid-reduce-long-covid-symptoms-yale-led-trial-finds-out/
- Similarly, a UCSF observational study saw no reduction in long COVID symptoms among vaccinated patients who took Paxlovid during acute infection (~16% vs 14%). https://onlinelibrary.wiley.com/doi/full/10.1002/jmv.29333
- In contrast, some case reports (13 patients) show mixed results: temporary or lasting improvements in select individuals after extended use (7–30 days). https://pmc.ncbi.nlm.nih.gov/articles/PMC10543503/
- A large observational cohort study in ~500,000 patients suggest Paxlovid taken within 5 days of diagnosis reduces the risk of Long COVID in high‑risk individuals, but not in low-risk groups. https://www.researchsquare.com/article/rs-4536807/v1
So, Paxlovid may help prevent Long COVID in high-risk acute cases but is not a proven treatment once Long COVID is established. This is another area where more research needs to be done.
Q: Is there a relationship with having two viruses so close together?
A: Having two viruses back-to-back, like a COVID re-infection or overlapping viral illnesses, can make lingering symptoms worse. Some people notice their symptoms come back or get worse after getting re-infected or dealing with multiple infections in a row. When viral episodes happen so close together, it can make recovery harder and stretch out symptoms for longer.
Q: What specific nervous system interventions seem to help?
A: Long COVID often impacts the central and peripheral nervous systems. Neuromuscular rehabilitation is becoming a go-to recommendation for managing symptoms. For issues like dizziness or vertigo, vestibular rehab exercises can be really effective, often without needing medication. Vagus nerve stimulation (VNS), whether implantable or noninvasive, has shown promise in conditions like fibromyalgia, chronic pain, and cognitive disorders, and there are even some trials underway for Long COVID. Other approaches like physical therapy, pacing strategies for fatigue, cognitive rehab, and occupational therapy are also commonly used, depending on the specific symptoms someone is experiencing.
Q: Did patients who had the vaccine significantly contribute to Long COVID?
A: Getting vaccinated at the time of infection generally cuts the risk of developing Long COVID by about 50% compared to those who aren’t vaccinated. That said, vaccinated people can still end up with Long COVID, but being vaccinated doesn’t seem to make it more common than in unvaccinated cases. While some people have reported symptom flares after getting vaccinated, there’s no solid evidence linking vaccination to causing Long COVID.
Q: If viral DNA is being stored as a virus, wouldn’t our bodies find and remove them?
A: Ideally, our immune system should find and clear out viral infections, and it often does. But with SARS-CoV-2, its RNA and proteins have been found sticking around in blood, stool, and tissues for a year or more after the initial infection. These bits can hide out in immune-privileged areas or sanctuary sites, creating a low-level reservoir that the immune system can’t fully clear. This can lead to ongoing inflammation and symptoms. So, while our immune system does a good job most of the time, it’s not always able to catch everything, especially in certain parts of the body.
Q: Is there a definition for Long COVID verified by testing?
A: The World Health Organization (WHO) defines Long COVID as symptoms that start or continue three months post-infection, lasting at least two months and not explained by other conditions. However, no single validated diagnostic test or biomarker currently exists. Diagnosis remains clinical, based on symptom patterns, history of COVID exposure, and the exclusion of other causes.
Q: Alternative medicine protocols versus allopathic treatment.
A: Alongside conventional allopathic care, some practitioners have come up with alternative protocols for Long COVID. However, there isn’t strong, peer-reviewed evidence to back any specific alternative treatments just yet. While I can share some off-label or integrative approaches, it’s important to know that none of these are officially approved or evidence-based for widespread clinical use at this point.
Q: If no Long COVID clinic is available, which physician is best? Infectious disease?
A: In this scenario: Starting with a Primary Care Physician is ideal—they can evaluate symptoms holistically and coordinate referrals. Specialized care often involves rehabilitation medicine and neurology. An infectious disease specialist may be appropriate if viral persistence is suspected, or complex immune/viral dysregulation is under consideration.
Q: Any research on off-label medications for Long COVID?
A: I want to make it clear that I am not advertising these treatments as again. There are no evidence-based treatment guidelines specific for long COVID yet.
After saying that: Yes, a variety of off-label drugs are being explored:
- Low-dose naltrexone (LDN) for fatigue, pain, brain fog; as an anti-inflammatory, some symptom relief in small studies
- Plavix (clopidogrel) and other anticoagulants, targeting microclots
- Rapamycin (low-dose) targeting immune dysregulation—pilot trials ongoing
- Guanfacine being studied for cognitive symptoms; targeting cognitive and neuroinflammatory pathways; trials underway
- Paxlovid (nirmatrelvir/ritonavir) under review for viral reservoir reduction
- Others include beta-blockers for autonomic issues, triptans for headaches, antihistamines, etc.
These remain largely off-label, with limited formal evidence and many requiring more research and clinical validation.
Besides medications, also looking at:
- Vagus nerve–targeted therapies: addressing brainstem/vagal dysfunction in ongoing research
- Rehabilitation strategies—including pacing, cognitive rehab, vestibular therapies—also support nervous system recovery
Q: During research, was anything found about patients who received the vaccine?
A: Vaccination is generally associated with a reduced risk of developing Long COVID. Studies frequently adjust for vaccination status. No substantial evidence shows that vaccinated individuals are more likely to cause or worsen Long COVID. Most research focuses on vaccine as a protective factor, not a causal factor.
Related CE course for nurses: COVID Update
Q: What does reimbursement for treatment look like?
A: That is going to depend on individual insurance plans. Allopathic care is generally covered by insurance under standard medical billing- including doctor visits and most general treatments. But off-label medication use generally is going to require preauthorization, and some insurers may deny coverage. Rehabilitation services such as PT and OT are usually covered if ordered by a provider. Again, it depends on the individual insurance plan. Alternative therapies like acupuncture and supplements are usually self-pay. Sometimes these can be covered by accounts like a flexible spending account. Everything insurance is very nuanced.
Q: What are the most serious Long COVID symptoms? Any emergent ones?
A: Severe manifestations include:
- Cardiovascular: Myocarditis, dysautonomia (e.g., POTS), palpitations
- Pulmonary: Shortness of breath, pulmonary fibrosis
- Neurological: Cognitive dysfunction (“brain fog”), neuropathy, seizures
- Vascular: Microclots and thromboembolic events
- Multisystem: Severe fatigue, post-exertional malaise, organ dysfunction
While rare emergent crises can occur (e.g., blood clots, severe cardiac issues), most symptoms are chronic rather than acutely life-threatening. However, they can severely impact quality of life
Q: If pregnant, will Long COVID-19 affect the fetus?
A: Current data on effects of maternal Long COVID during pregnancy are limited. However:
- Active COVID during pregnancy can raise risks of preterm birth and adverse outcomes.
- Persistent post-COVID symptoms may worsen a mother’s health (e.g., fatigue, cardiopulmonary issues), indirectly affecting fetal well‑being.
- No definitive evidence shows Long COVID directly harms fetal development. However, close obstetric and maternal‑fetal monitoring is advised in symptomatic pregnant patients.
Supporting patients facing Long COVID-19
Long COVID poses unique challenges for patients and healthcare providers alike. As patient advocates, nurses have the knowledge and compassion to guide those affected toward better management and improved quality of life. If your team is ready to deepen its understanding of Long COVID, join our upcoming free CE webinars for nurses. Designed and led by industry experts, these sessions explore crucial topics like burnout and compassion fatigue. They offer valuable insights and practical strategies to empower nurses in their roles.
