Post-COVID-19 Program
Frequently Asked Questions

At UT Health Austin, we focus on you, the whole patient, making sure that you have the support you need throughout your care. Our goal is to help patients recover from the lasting effects of COVID-19 through rehabilitation and other therapies designed to restore their function and quality of life.

Our experienced healthcare professionals deliver personalized, whole-person care and treat each patient as an individual with unique circumstances, values, and beliefs. We collaborate with our colleagues at the Dell Medical School and The University of Texas at Austin in addition to community healthcare professionals to utilize the latest research, diagnostic, and treatment techniques, allowing us to learn more about this emerging illness and develop diagnostic and therapeutic guidance as well as referral pathways to specialty providers.

Long COVID affects each individual differently, but treatment will generally include a discussion of the following:

• Energy management: Fatigue, “brain fog,” and post-exertional malaise are the most common symptoms of long COVID. Post-exertional malaise is the medical term for a significant worsening of symptoms following physical or mental exertion, even if the activity was relatively minor. Managing energy by being intentional about your activities and getting adequate rest to prevent post-exertional malaise is very important to treating long COVID. We spend significant time discussing how this affects you and make personalized recommendations for managing energy.
• Intentional rehabilitation: Long COVID has significant effects on the body and mind. We have developed protocols that provide patients with tools for recovery. This may include physical therapy, cognitive therapy, and/or mental health counseling
• Symptomatic management with medications: There are currently no curative treatments for long COVID at this time. However, evidence-based medications are available to treat common symptoms of the illness. This includes medications to treat fatigue, insomnia, nerve pain, anxiety, and more. While medications may not be for everyone, they can be effective in many cases. If this is of interest, we can discuss your options.
• Emerging targeted or experimental therapies: There is no single targeted or curative treatment for long COVID, as we do not fully understand the cause (or causes) of the illness. Most individuals experience significant recovery by focusing on energy management and intentional rehabilitation, with or without symptomatic medication. Research is ongoing to find treatments specific for long COVID, which may be available through a research study or available “off-label,” meaning the treatment can be prescribed by a healthcare provider even though it has not been studied or approved by the FDA for that specific condition or dosage. While we do not recommend this to be the focus or starting point of any treatment plan, we are happy to discuss research opportunities and the safety, efficacy, and availability of different treatments as research emerges.

We provide a broad spectrum of care for individuals who were diagnosed with COVID-19 and continue to experience various physical, cognitive, and functional difficulties several months after initial diagnosis. Our services are available to patients whether their symptoms were mild to moderate or they experienced hospitalization, as we are aware that many COVID-19 patients who recovered from the illness at home may also be experiencing lingering symptoms or disabilities that can be improved through rehabilitation and other therapies.

The Post-COVID-19 Program is committed to studying and developing treatments for this new disease. Patients may have the opportunity to meet with a research coordinator to discuss their interest in participating in ongoing studies at The University of Texas at Austin. We also collaborate with our colleagues at the Dell Medical School and The University of Texas at Austin to utilize the latest research, diagnostic, and treatment techniques, allowing us to learn more about this emerging disease and develop diagnostic and therapeutic guidance as well as referral pathways to specialty providers.

The Post-COVID-19 care team includes specialists in internal medicine, neurology, social work, and more who work together to create an individualized treatment plan that meets your specific needs. We also work alongside specialists across UT Health Austin’s Mitchel and Shannon Wong Eye Institute and UT Health Austin’s Rheumatology Clinic and collaborate closely with referring physicians and other partners in the community who have experience treating patients with long COVID, including physical therapists and pulmonologists.

Yes, appointments with the Post-COVID-19 Program are available by referral only. Speak with your primary care provider to request a referral. While we do not require proof of a positive COVID-19 test for a clinical appointment, we do screen all referrals and reach out to patients prior to scheduling an appointment to make sure their symptoms are likely the result of long COVID and not another illness.

If you need assistance with getting a referral, please call the Post-COVID-19 Program at 1-833-UT-CARES (1-833-882-2737) and we will be happy to help.

The Post-COVID-19 Program carefully reviews all referral details before scheduling any appointments. This ensures each patients receives the appropriate assistance required to address their unique needs. We request that your referring provider sends us information regarding your COVID-19 infection, symptoms of long COVID, and medical records.

Occasionally, the information from referring providers is incomplete. In such cases, we will contact your referring provider for the missing information, which may delay the scheduling of your appointment while we wait for their response. If you have not received any communication from the Post-COVID-19 Program within two weeks after you were referred to our clinic, please follow up with your referring provider to ensure they have sent all requested information. This will help us expedite the scheduling of your appointment and ensure we are able to provide the necessary care to meet your specific needs.

In cases where our review of the referral details raises concerns that your symptoms may not be related to long COVID or might require treatment from other medical specialists, we will hold off on scheduling the initial appointment and communicate our rationale to your referring provider. We ask that your referring provider then discuss these concerns with you directly. If clarifications or updates are necessary based on our feedback, your referring provider can submit an updated referral.

Prior to your initial appointment, you will receive multiple emails requesting you to register as a patient at UT Health Austin. You will also receive an email with a detailed questionnaire about your Post-COVID-19 symptoms. We ask that you follow the enrollment instructions in the emails and complete all questionnaires as soon as possible to ensure your providers have time to review your answers prior to your visit.

Your initial visit can take up to 2-3 hours. We spend a lot of time addressing your concerns and answering your questions. You will see several different members of the care team during your visit, including a medical assistant for intake, a social worker, and a research coordinator as well as your medical provider. We will evaluate your wellness, including any personal, mental health, cognitive, or rehabilitation needs. After the assessment has been completed, we will recommend a personalized care plan and provide referrals to other medical specialists as needed. A summary of your visit will be sent to your UT Health Austin online patient portal 1-2 days after your visit. Every phase of your assessment and all recommendations will also be shared with your primary care provider as well as any designated caregivers.

Screening methods include:

• General health questionnaire
• Post-COVID-19 symptom questionnaire
• Medication consult and reconciliation
• Montreal Cognitive Assessment (MoCA)
• Mental health screening assessment for depression (PHQ-9), anxiety (GAD-7), and PTSD (PC-PTSD-5)
• Social and financial impact of COVID-19

If any labs are ordered, they will not be fasting labs. We suggest bringing water and a snack to help keep your energy up. We also encourage you to bring a care partner to your visit to help you with questions and note-taking. If your visit is a telehealth visit, we can arrange to have your care partner call in or join by Zoom.

You may also have the opportunity to meet with a research coordinator to discuss your interest in participating in ongoing studies at The University of Texas at Austin.

For more information on how to prepare for your appointment, please visit here.

UT Health Austin accepts most insurance plans in Central Texas. To view a complete list of accepted insurance plans, please visit here.

For patients without insurance or who prefer to self pay, we offer different payment options. Self-pay patients are offered a prompt pay discount or payment plans.

For questions about our payment options or to verify that we accept your insurance plan, please call our Access Center at 1-833-UT-CARES (1-833-882-2737).

Please note: Insurance plans are subject to change at any time and without notice. A patient’s level of coverage depends on the specific benefits described in their plan. Patients are responsible for verifying that UT Health Austin is a participating provider and that their benefits plan allows them access to care on the day of their first scheduled visit. Please contact your insurance plan or benefits administrator to verify this information.

To explore FAQs regarding your upcoming visit, please visit here.

UT Health Austin’s Post-COVID-19 Program is committed to providing compassionate, whole-patient care to ensure patients are receiving the highest level of specialized care. We believe you deserve the best possible care, which is why we’ve compiled handouts, educational videos, and links to additional resources that may be beneficial to you.

Explore our list of patient resources.

The Post-COVID-19 Program is committed to studying and developing treatments for Long COVID. We collaborate with researchers at the Dell Medical School and The University of Texas at Austin. Patients receiving care may have the opportunity to participate in research, which may include filling out surveys, donating a blood sample, and/or in some cases, receiving experimental treatments. Participation in research is optional, but if you are eligible and interested in participating, you will have an opportunity to learn more from our research coordinator.

There are additional research programs around the country, including the NIH’s RECOVER trial. The NIH’s site includes ways to contact them directly to participate. In many cases, patients can participate in multiple research opportunities. If you are exploring different research options, you may want to discuss this with the researcher coordinator when you sign up for a study as part of the informed consent process.

Organizations for patient advocacy:

• National Center for Health Research
• American Academy of Physical Medicine and Rehabilitation (AAPMR)
• Body Politic

Long COVID is a term most patients use when referring to post-acute sequelae of COVID-19 (PASC). PASC is the scientific name for a recognized syndrome in which individuals continue to experience new or persistent symptoms months after initial COVID-19 infection. PASC is also commonly known as “post-COVID-19” and patients with long COVID often refer to themselves as “long-haulers.”

While this is an area of active research, the risks of developing long COVID is generally associated with the severity of the initial COVID-19 illness and the underlying immune response of individuals.

The sicker an individual is during their initial COVID-19 illness, the more likely they are to develop persistent symptoms. One study showed that 37% of patients admitted to an intensive care unit (ICU) had symptoms 6 months after their illness as compared to 4% of individuals who were never hospitalized. Individuals with a higher number of symptoms during the first week of their infection and higher levels of the virus in their blood are more likely to develop long COVID. Similarly, individuals at highest risk for developing severe initial infections, such as those with obesity, diabetes, or of older age, are more likely to experience lingering symptoms.

Most cases of COVID-19 do not require hospitalization, and it has been well reported that many individuals who developed long COVID had mild or asymptomatic initial illness. Individuals who were not hospitalized make up to 75% of cases of long COVID. These risks may be related to an individual’s underlying immune response, which can make them susceptible to long COVID, although the exact factors and mechanisms are unclear at this time. Research shows that individuals with pre-existing autoimmune antibodies in their blood or asthma are at risk for developing long COVID.

Approximately 80% of all individuals diagnosed with autoimmune disorders are women, and it has been shown that women are more likely to develop long COVID than men. This illustrates the possible autoimmune cause of long COVID, which is being studied. One study found that individuals who have reactivation of Epstein-Barr Virus (EBV), the virus that causes mononucleosis, in their blood when they were infected with COVID-19 were more likely to develop long COVID. On follow-up blood samples 3 months after the initial infection, no patients in that study had persistent EBV reactivation, so it is unclear if EBV is directly related to the symptoms or is more a sign of a dysregulated immune response.

While long COVID seems to predominately affect adults, research suggests that children and adolescents are also at risk for developing long COVID, with estimates ranging from 4% to 25% of all COVID-19 cases for this age group.

Research shows that most patients recover from their initial COVID-19 infection within 4 weeks, and symptoms continue to lessen between 4 to 12 weeks, with improvement slowing around 12 weeks after the infection. While there is no consensus definition of when long COVID begins, most experts consider the symptoms that persist after 12 weeks to be long COVID. Men and women have a similar recovery pattern, although women tend to experience and report more symptoms.

Individuals whose symptoms are lasting more than 12 weeks do continue to improve, although the recovery process may be slower. The Post-COVID-19 Program does not have any strict cutoffs for referrals; however, because most individuals have significant improvement within those first 12 weeks, we generally encourage patients to wait to make their initial appointment until after this period. In the meantime, we still do recommend following up with your primary care provider to schedule a general exam. Managing energy by being intentional about your activities and getting adequate rest to prevent post-exertional malaise, the significant worsening of symptoms following physical or mental exertion no matter how minor, can be very helpful in those first 12 weeks. Depending on your symptoms, beginning intentional rehabilitation with physical therapy, cognitive therapy, and/or mental health counseling during weeks 4-12 may also be helpful.

If you are continuing to experience symptoms of COVID-19 months after initial infection, speak with your primary care provider about being referred to a multidisciplinary care team with expertise in long COVID.

If you need assistance with getting a referral to UT Health Austin’s Post-COVID-19 Program, please call 1-833-UT-CARES (1-833-882-2737) and we will be happy to help.

The course of long COVID differs between individuals. As it is a new disease, not enough time has gone by to accurately estimate how long the recovery process should be. Many patients with symptoms lasting more than 6 months are reporting slow but persistent recovery, although some patients are reporting symptoms lasting longer than this.

Some individuals describe a “relapsing and remitting” course, where they experience periods of improvement followed by a recurrence of symptoms, with or without a trigger. Pushing through fatigue or overexertion (on physical, cognitive, or emotional tasks) is a common trigger of “relapses.” This is called post-exertional malaise, where activities that were not normally tiring can make long COVID symptoms worse. Research shows that when individuals with long COVID no longer experience post-exertional malaise, most of their other symptoms improve as well. Research from post-viral illnesses prior to COVID-19 also demonstrates a gradual but persistent recovery. It is uncertain at this time whether long COVID will cause irreversible damage or if it will place individuals at a higher risk for developing other illnesses. At this time, we are cautiously optimistic that patients will recover without permanent effects, and initial research is showing most patients experience a significant recovery from long COVID within a year.

Individuals with long COVID continue to experience symptoms of COVID-19 months after initial infection, and most individuals with COVID-19 are no longer contagious 10-20 days after their symptoms begin. While long COVID is not contagious like the initial infection, we still recommend all long COVID patients receive COVID-19 vaccination and take the appropriate health precautions to prevent re-infection.

Scientists and physicians are still learning about how past and emerging strains of COVID-19 may contribute to long COVID. Earlier COVID-19 variants, such as the Delta variant, appear to contribute to higher frequency of severe/persistent long COVID symptoms, though more recent strains, such as the Omicron variant, still lead to long COVID. Although the risk of developing long COVID with Omicron is lower, Omicron is more contagious and many more individuals are becoming infected with Omnicron, causing the overall cases of long COVID to continue to increase. Studies are underway to determine whether different viral strains may contribute to different types of long COVID symptoms, but generally our experience at the Post-COVID-19 Program has been that the symptoms are similar no matter what variant an individual had.

Long COVID is now recognized as a disability under Titles II and III of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act of 1973 (Section 504), and Section 1557 of the Patient Protection and Affordable Care Act (Section 1557). Each of these federal laws protects individuals with disabilities from discrimination. You are entitled to full and equal opportunities to participate in and enjoy all aspects of civic and commercial life.

Some individuals with long COVID can continue to work with accommodations, such as decreased hours, working from home, and the ability to take rests. Other individuals with long COVID whose job does not allow these accommodations may also be eligible for disability benefits, including short-term or long-term disability coverage through their employee benefits. Benefits through Social Security (SSDI or SSI) may also be available if their disability is expected to prevent them from working for at least a year or result in death. Applying for SSDI and SSI is a complicated process and can take months, so it is important to apply as early as possible. An initial application is filed with the Social Security Administration. We have specific information on navigating workplace accommodations and disability benefits on our Patient Resources page.

It is recommended that patients go through their primary care providers when filling out any disability paperwork, including letters for work and short-term/long-term disability forms. The Post-COVID-19 Program can provide a general letter of support to primary care providers, indicating a patient has been seen in clinic and has symptoms consistent with long COVID.

If your primary care provider is unable to complete these forms, we ask that you schedule a follow-up appointment with the Post-COVID-19 Program so that the forms can be completed by a member of the Post-COVID-19 care team at that time. This helps ensure the forms are as accurate as possible. No forms will be filled out during your initial evaluation visit, as we dedicate this time to developing a comprehensive recovery plan that is tailored specifically to your needs.

People experiencing long COVID face varying health challenges. Day-to-day activity can often feel very uncertain and symptom severity differs among those with long COVID. It is important to acknowledge the complexities of this condition when supporting those with long COVID. There may be days when the person you are caring for does not appear ill, but they are still struggling with lingering and more invisible symptoms.

One way to be supportive is by listening compassionately and validating their experience of illness. Begin a conversation with them to figure out where they may need support and determine what is most helpful for them. Keep in mind that this may change from day to day. Some individuals with long COVID may have difficulties completing household tasks that they performed prior to infection, such as cleaning, cooking, and laundry. They may need assistance with household chores, especially if they have other responsibilities to manage, such as work or childcare. Fatigue is the most common symptom of long COVID, and physical, mental, or emotional effort can make all the symptoms worse, which is a medical phenomenon known as post-exertional malaise.

Another way to support those with long COVID is to deepen your understanding of the condition. It can be exhausting for individuals with long COVID to feel that they have to explain their illness repeatedly. Increasing your knowledge about long COVID can also strengthen the compassion and support you provide. You can learn more and stay informed about long COVID by watching the educational videos on our Patient Resources page.

While many symptoms are associated with long COVID, some of these symptoms may be more suggestive of an emerging autoimmune disorder. Individuals who experience new onset and persistent positional dizziness, heart palpitations, sweat dysregulation, gastrointestinal symptoms, neuropathic pain, unusual rashes, new one-sided weakness or numbness, should seek an evaluation for an autoimmune etiology of their symptoms.

Depending on the long COVID symptoms experienced by the patient, treatment modalities may include changes to daily routines, slowly increasing physical activities, improving diet, optimizing sleep, and considering symptomatic or disease modifying therapies that are targeted to the organ systems affected in the individual patient. For patients with emerging or worsening autoimmune disorders, immunomodulatory treatments are being evaluated.

While different causes have been proposed to explain long COVID, emergence of autoimmunity is thought to be an important driving factor of long COVID.

Research studies on long COVID autoimmunity are focusing on understanding:

• What the different autoantibodies that can contribute to long COVID are and whether these autoantibodies may be transient or persistent over time
• How types of different immune cells, such as T and B cells, neutrophils, and monocytes change in response to SARS-CoV-2 infection
• Whether there is re-activation of chronic viruses post -SARS-CoV-2 infection, such as Epstein Bar Virus (EBV), the virus that causes mononucleosis
• How the balance between our gut microbiome species changes in response to SARS-CoV-2 infection and how these gut microbiome constituents influence the rest of the body

Approximately 5% to 30% of patients who experience severe or mild symptoms of COVID-19 develop long COVID. The most common symptoms of long COVID include persistent fatigue, brain fog, weakness, heart palpitations, vision changes, headaches, tinnitus, pain, sleep disturbances, gastrointestinal abnormalities, pain, anxiety, and depression. These symptoms either continue to linger after the acute COVID-19 illness or occur within weeks of recovery from the acute COVID-19 illness. For some patients, the symptoms of long COVID may continue for months. There is no specific test or findings that diagnose long COVID. Research is currently ongoing to define specific blood and imaging biomarkers of long COVID that could help to improve diagnosis and treatment of this emerging condition that can affect multiple body systems.

Patients experiencing persistent or new symptoms following COVID-19 infection should speak with their primary care physician about the possible diagnosis of long COVID and consider an evaluation at a long COVID center.

Symptoms of long COVID may include:

• Fatigue
• Difficulty sleeping
• Persistent cough
• Shortness of breath or difficulty breathing
• Chest pain
• Headaches
• Joint or muscle pain
• Loss of smell or taste
• Rash
• Hair loss
• Rapid or pounding heartbeat
• Depression or anxiety
• Fever or night sweats
• Inability to control body temperature
• Constipation
• Diarrhea
• Memory problems or difficulty concentrating
• Dizziness
• Confusion
• Worsened symptoms after physical or mental activities (medically called post-exertional malaise)

Having symptoms of anxiety and depression following a COVID-19 infection is very common. Many patients report either new onset of anxiety, depression, or a worsening of previous symptoms. The relationship between long COVID and anxiety and depression is complex. Symptoms of depression, including fatigue and difficulty concentrating, can clearly be caused by the effects of long COVID on the brain, and anxiety may be part of the neuroinflammatory effects of the illness. At the same time, going through a complex and debilitating illness affects individuals emotionally and can cause mood symptoms, which makes it more difficult to cope with the other symptoms of long COVID. There are evidence-based treatments for anxiety and depression. Although we may not fully understand their relationship to long COVID, evidence-based treatments for anxiety and depression exist and are available.

Symptoms of anxiety may include:

• Feeling nervous, anxious, or on edge
• Not being able to stop or control worrying
• Worrying too much about different things
• Having trouble relaxing
• Being so restless it’s hard to sit still
• Becoming easily annoyed or irritable
• Feeling afraid, as if something awful might happen

Symptoms of depression may include:

• Experiencing little interest or pleasure in doing things you love
• Feeling down, depressed, or hopeless
• Having trouble falling asleep, trouble staying asleep, or sleeping too much
• Feeling tired or having little energy
• Experiencing poor appetite or overeating
• Feeling bad about yourself
• Having trouble concentrating on things
• Experiencing thoughts that you would be better off dead or of hurting yourself or someone else in some way

If you are experiencing thoughts of suicide, please reach out to the 988 Suicide and Crisis Line by either calling or texting 988. The Lifeline provides 24/7 free and confidential support for individuals in distress as well as prevention and crisis resources for you or your loved ones.

Speak to your primary care provider about any concerns related to anxiety and/or depression, especially if these symptoms are causing significant distress or impairment in a major life activity. You can also request a referral to a mental health provider for further evaluation and therapy. Available evidence-based treatments include cognitive behavioral therapy (CBT), acceptance and commitment therapy (ACT), and dialectical behavioral therapy (DBT).

Tremors and sensations of total body vibration, such as a buzzing or tingling in the limbs, as well as tinnitus (ringing in the ears) can be attributed to various neurological causes in long COVID. While symptoms of long COVID can be hard to describe, it is recommended that you write down as much information as possible to prior to your evaluation.

The following information can help with your evaluation:

• Type of tremor, including what parts of the body are affected and what the movement is like
• Timing and duration of symptoms, including anything that may be causing the symptoms to begin
• Variation of symptoms with sleep, time of day, or stress levels
• Medications you are taking that may affect the symptoms

Rapid and irregular heart rates have been widely reported in long COVID. Patients who were hospitalized have significant rates of cardiac injury, and it is recommended that a full evaluation be conducted by their primary care provider or a cardiologist. Individuals who recovered at home very rarely experience long-term cardiac injury (less than 1%); however, they should be evaluated as well but will likely need less testing than those patients who were hospitalized.

The exact cause of heart rate problems in long COVID is not known. Exercise testing in individuals with long COVID who were healthy prior to their COVID-19 infection and were not hospitalized has not shown any heart or lung problems. Instead, these exercise tests have shown that there is a problem with the ability of the body’s muscles and tissues to use oxygen. Some researchers have hypothesized that this is due to a problem of either metabolism of the body and/or the body’s microcirculation and the nerves that control it. Either way, on these exercise tests it appears that a high heart rate and hyperventilation are more of a compensatory mechanism for the problem of the ability of the body’s cells to use the oxygen, rather than a problem with the heart and lungs themselves.

Some patients also have neurological symptoms of their autonomic nervous system. These autonomic small nerves control heart rate, blood pressure, and other involuntary functions in the body. When these nerves are not functioning properly, it is referred to as “dysautonomia,” which has been reported in patients after experiencing COVID-19 and other viral illnesses. Postural orthostatic tachycardia syndrome (POTS) and inappropriate sinus tachycardia causing erratic heart rate are forms of dysautonomia. Treatment is available for these conditions.

Patients with long COVID frequently experience cough, chest tightness, or shortness of breath with activity. Feeling short of breath is a complex phenomenon that can be caused by lung problems, heart problems, deconditioning of the muscles, neurologic issues, or even a combination of these. Patients who required hospitalization and oxygen for their initial COVID-19 illness may have lung scarring and decreased air exchange measured on pulmonary function tests (PFTs), which evaluate the respiratory system and how well the lungs are functioning. For patients who did not require oxygen or were not admitted to a hospital, the rate of lung scarring is very low and, in most cases, their PFTs are normal.

Long COVID does not cause asthma, but it can cause lung problems with symptoms similar to that of asthma. Some patients also report worsening allergies or the worsening of their pre-existing asthma. If you are experiencing breathing difficulties after COVID-19 infection, it is recommended that you speak with your primary care provider about a basic initial evaluation. Testing may include a chest x-ray, labs to rule out anemia or thyroid problems, and PFTs.

In exercise testing in patients with long COVID who were healthy prior to their COVID-19 infection and were not hospitalized, research studies have shown that lung problems are very rare. Instead, these exercise tests have shown that there is a problem with the ability of the body’s muscles and tissues to use oxygen. Some researchers have hypothesized that this is due to a problem of either metabolism of the body, and/or the body’s microcirculation and the nerves that control it. Either way, on these exercise tests it appears that a high heart rate and hyperventilation are more of a symptom of body’s inability to use the oxygen normally, rather than a problem with the heart and lungs themselves.

Post-exertional malaise, also known as “PEM” or “payback,” is a common symptom of long COVID and refers to a significant worsening of symptoms after physical or mental exertion, even if the activity was relatively minor. This can include activities such as walking up stairs, carrying groceries, or working on a computer for a prolonged period of time.

Symptoms of post-exertional malaise can include fatigue, muscle aches, difficulty breathing, and cognitive impairment. These symptoms can last for days or even weeks after the initial exertion and can significantly impact an individual’s quality of life.

It is important to recognize that post-exertional malaise is a real and serious symptom of long COVID, and it is not simply a matter of being “out of shape” or “not trying hard enough.” Managing post-exertional malaise involves finding a balance between rest and activity and may require accommodations, such as reduced hours or a modified work schedule. For many patients, when they are experiencing a “relapse” of their symptoms, they are actually experiencing post-exertional malaise. A common pattern our patients describe is feeling fatigued to the point that when they finally have a good day and they go out and do all activities they haven’t been able to do, they feel terrible afterwards. By doing too much on a good day, they are causing post-exertional malaise.

Here are some tips for managing post-exertional malaise:

• Pace yourself: Avoid overexerting yourself and try to break up activities into smaller portions
• Get plenty of rest: Make sure to get enough sleep and allow for adequate rest between activities; Rest should truly give your mind and body a break, as even passively watching TV, listening to a Podcast, or scrolling on the phone can drain energy
• Gradually increase activity: Begin with low-level activities and gradually increase your level of exertion over time
• Listen to your body: Pay attention to your symptoms and take breaks when needed

By following these tips, you can help manage post-exertional malaise and improve your quality of life. Remember, it is important to work with your healthcare provider to find a treatment plan that works for you.

Post-traumatic stress disorder (PTSD) is common following COVID-19, with 6% of survivors receiving their first psychiatric diagnosis within 90 days of illness and up to 30% of all ICU survivors experiencing PTSD at some point following COVID-19 illness.

PTSD symptoms may include:

• Flashbacks
• Nightmares
• Hypervigilance
• Avoidance
• Irritability
• Anxiety
• Depression

Speak to your primary care provider about being screened for PTSD and/or request a referral to a mental health provider for further evaluation and therapy. Available evidence-based treatments include trauma-focused CBTp (cognitive behavioral therapy for psychosis), cognitive processing therapy, EMDR (eye movement desensitization and reprocessing), and exposure therapy.

There is still a lot we do not know about long COVID. In the absence of evidence-based guidelines for the diagnosis and management of this new disease, we are working to learn as much as we can about this emerging disease so that we can develop diagnostic and therapeutic guidance as well as referral pathways to specialty providers. Treatment options look different for each individual, as treatment is based on that individual’s specific symptoms.

As we have gained experience caring for patients with long COVID, we have begun to group treatments into the following categories:

• Energy management: Fatigue, “brain fog,” and post-exertional malaise are the most common symptoms of long COVID. Post-exertional malaise is the medical term for a significant worsening of symptoms following physical or mental exertion, even if the activity was relatively minor. Managing energy by being intentional about your activities and getting adequate rest to prevent post-exertional malaise is very important to treating long COVID. Your provider will likely spend significant time discussing how this affects you and make personalized recommendations for managing energy.
• Intentional rehabilitation: Long COVID has significant effects on the body and mind. We have developed protocols that provide patients with tools for recovery. This may include physical therapy, cognitive therapy, and/or mental health counseling
• Symptomatic management with medications: There are currently no curative treatments for long COVID at this time. However, evidence-based medications are available to treat common symptoms of the illness. This includes medications to treat fatigue, insomnia, nerve pain, anxiety, and more. While medications may not be for everyone, they can be effective in many cases. If this is of interest, we can discuss your options.
• Emerging targeted or experimental therapies: There is no single targeted or curative treatment for long COVID, as we do not fully understand the cause (or causes) of the illness. Most individuals experience significant recovery by focusing on energy management and intentional rehabilitation, with or without symptomatic medication. Research is ongoing to find treatments specific for long COVID, which may be available through a research study or available “off-label,” meaning the treatment can be prescribed by a healthcare provider even though it has not been studied or approved by the FDA for that specific condition or dosage. While we do not recommend this to be the focus or starting point of any treatment plan, we are happy to discuss research opportunities and the safety, efficacy, and availability of different treatments as research emerges.

We highly recommend focusing initially on energy management and intentional rehabilitation. Depending on your symptoms and preferences, we may consider medications or more emerging treatments.

There are currently no FDA-approved therapies for long COVID. Research is still in the preliminary stages, and as it is released, clinicians and patients must continue to examine and evaluate any published studies in a vigorous scientific manner.

Research and approval of new medications or treatments is a slow process, requiring strict protocols to protect the safety of volunteer participants in the trials and to ensure the treatment has its intended effect over time. Researchers across the country are working hard to develop these treatments, and as they become available, individuals can consider participating if they are eligible. However, it will likely be months to years before the results of these trials are known. Depending on an individual’s symptoms and other health issues, they may be eligible to try experimental treatments as part of a research study at the Post-COVID-19 Program.

There currently is not a test (laboratory, imaging, or physical exam finding) that can diagnose long COVID. While developing a test for diagnosing long COVID is a priority for researchers, at this time, all workup is focused on ruling out other conditions that could be causing or contributing to the symptoms of long COVID. Therefore, it is recommended that all patients get an initial general medical screening exam and be evaluated for cardiovascular, gastrointestinal, and neurological diseases as well as make sure co-occurring conditions, such as diabetes, high blood pressure, and other chronic conditions, are well-controlled and that age-appropriate medical screenings are up to date.

Patients who were hospitalized with COVID-19 during their initial illness may be at risk for damage to their organs, including lung scarring, decreased kidney function, and heart damage. Therefore, if symptoms persist beyond 12 weeks, it is recommended to undergo initial tests of these organs. For individuals who recovered at home from their COVID-19 infection and did not require hospitalization, persistent lung or heart damage is rare. Generally, this means laboratory or imaging tests for long COVID should be limited for individuals who recovered at home and were previously healthy, unless there is concern for other illnesses based on the clinical evaluation. While it is still reasonable for individuals who were not hospitalized to undergo these tests for persistent symptoms, they are not always necessary and, in most cases, will be normal.

Therefore, testing will be highly individualized based on symptoms. The American Academy of Physical Medicine and Rehabilitation (AAPM&R) sponsors a PASC Collaborative which is writing recommendations for healthcare providers. We recommend your primary care physician or healthcare providers review this guidance as a starting point prior to your referral to the Post-COVID-19 Program.

Care for long COVID begins with evaluation by the primary care provider to rule out other conditions that may be contributing to symptoms. If symptoms are persistent, patients should ask to be referred to a clinic specializing in long COVID or consider specific specialists for the active symptoms (e.g., cardiology, pulmonology, physical medicine and rehabilitation, neurology, neuroimmunology, rheumatology, neuro-otology, ENT, and social work). Physical therapy and occupational therapy remain cornerstones of treating long COVID.

Care for long COVID should involve a multidisciplinary team given multiple-organ involvement in this syndrome.

Yes, most patients should be treated for COVID-19 reinfections. COVID-19 treatments are available and highly effective. Specifically, we recommend antiviral therapy as soon as possible, as it is most effective the earlier you receive it. Anti-viral outpatient medications include Paxlovid (nirmatrelvir + ritonavir), monoclonal antibody infusions, or Lagevrio (molnupiravir), which are available by prescription from healthcare providers and some pharmacists.

While these antiviral outpatient medications are designed to prevent severe illness and hospitalization, there is some evidence that they help patients recover faster and may reduce the risk of developing long COVID. Individuals older than 65 years of age or with health conditions that put them at risk for severe COVID-19 outcomes are eligible for treatment. Having long COVID is not one of the health conditions for eligibility listed by the CDC; however, healthcare providers have some discretion depending on your medical history and long COVID symptoms. While we have found that reinfections in patients with long COVID are mild and they recover quickly, there is a small portion of patients that have reported reinfection made their long COVID symptoms worse. Therefore, we generally recommend antiviral treatment for patients with long COVID to prevent a severe outcome, although this should be a decision made with your healthcare provider.

Getting treatment immediately after a positive COVID-19 test is important. As the Post-COVID-19 Program has limited appointments, we recommend that patients reach out to their primary care physician or urgent care to discuss their options for treatment. Same-day telehealth appointments are also available at UT Health Austin’s Walk-In Clinic. The Post-COVID-19 Program will not prescribe antiviral treatment through the online portal, so please do not delay treatment and contact your primary care provider or the Walk-In Clinic to make an appointment.

Upwards of 80% of individuals with long COVID experience some degree of brain fog, including issues with memory, lack of concentration, headaches, confusion, and decreased mental clarity. The available research shows that the most prominent problem individuals have with long COVID is deficits in concentration and attention, which is usually associated with fatigue. Not being able to concentrate affects an individual’s ability to carry out complex tasks and perform at work, and it is clear that mental activity can make fatigue and long COVID symptoms worse, a phenomenon known as “post-exertional malaise.” (Post-exertional malaise is the medical term for a significant worsening of symptoms following physical or mental exertion, even if the activity was relatively minor.) The brain is the most metabolically active organ in the body, so mental tasks can be just as draining as physical ones. Although long-term memory is usually not directly affected by long COVID, difficulty with attention makes it difficult to form new- and short-term memories.

We recommend managing your energy and avoiding over-exertion rather than carrying out specific “mental exercises.” This includes listening to your body and resting when needed as well as taking a mental break from all stimuli (a sensory break, as even passively watching TV, listening to a Podcast, or scrolling on the phone can drain energy). Going on daily walks and engaging in brain games, such as crosswords and puzzles, can help refocus the brain as long as the activity is enjoyable. These activities should be paced to avoid over-exertion.

Current recommendations include:

• Decreasing screen time
• Improving sleep hygiene habits (e.g., approximately 8 hours per night, no screens in the hour prior to bed, waking up at a similar time every morning)
• Making lists or setting reminders to help you concentrate and compensate for attention deficits
• Avoiding alcohol

Some patients with severe symptoms may benefit from supervised cognitive therapy with a speech language pathologist, neuropsychologist, or other trained professional. This can be extremely helpful to identify your strengths and weaknesses as well as develop a personalized plan and strategies to overcome cognitive deficits.

It is recommended that most patients with long COVID be engaged in a supervised and graduated rehabilitation plan. This means that most patients should have a healthcare professional develop a personalized movement plan that avoids over-exertion and promotes healthy lifestyles. A physical therapist can develop this plan for most patients.

We recognize that the most common symptom of long COVID is fatigue and that overexertion known as “post-exertional malaise” can worsen all symptoms. (Post-exertional malaise is the medical term for a significant worsening of symptoms following physical or mental exertion, even if the activity was relatively minor.) Therefore, we do not recommend “exercise” per se, because if it is done improperly, it can make individuals feel worse. Instead, we recommend doing aerobic activities that help break the cycle of deconditioning (where the fatigue causes loss of muscle mass and individuals begin to get out of shape, which in turn makes the fatigue worse), but do not cause post-exertional malaise. This means finding a balance of doing whatever aerobic activity you can tolerate and slowly building on it as well as decreasing the amount or intensity of the activity if it causes post-exertional malaise. Physical therapists with experience treating long COVID can help individuals find this balance. Generally, our patients say that low impact activity, such as walking, swimming, or biking, is much better tolerated than high-impact activities, such as running, lifting weights, or jumping rope.

For patients with a history of heart disease or cardiovascular risk factors, cardiac rehabilitation aims to reduce cardiovascular risk factors in patients by focusing on lowering blood pressure; improving control of cholesterol levels and diabetes; and implementing tobacco cessation counseling, behavioral counseling, and graded physical activity. This typically includes 36 sessions of monitored graduated exercise over the course of 12 weeks. While cardiac rehabilitation is not specific to long COVID and physical therapy will likely be enough for most patients, many of the principles of cardiac rehabilitation overlap and may also help address heart health issues in individuals with long COVID as long as it is not too intensive and causing post-exertional malaise.

Neural retraining is a program focused on using elements of cognitive behavioral therapy, mindfulness practices, behavior modification, and emotional therapy. While there are currently no FDA-approved treatments for long COVID, many of the tenets of neural retraining may help address mental health symptoms and cognitive dysfunction commonly associated with long COVID.

There are currently no FDA-approved treatments for long COVID. In order for a supplement to be approved and marketed in the United States, it simply needs to prove that is safe, whereas a prescription medication needs to gain FDA approval by proving that is safe and effective. Therefore, supplements available in pharmacies or specialty stores are generally safe, but can claim to have broad health effects that are not necessarily supported by evidence-based research or data. There are many supplements that have been studied that are said to help with chronic fatigue, but in many cases the research is poor quality or inconclusive.

If you are interested in taking a supplement or “natural” medication, we recommend you do the following:

• Read about the side effects or medication interactions to make sure it is safe for you and can be taken with your other medications. Check in with a healthcare provider or pharmacist if you are unsure.
• Before beginning a supplement, decide how you will measure and evaluate whether it is helpful for you and how long you will have to take it to see the benefit. If you find it helpful at the end of the decided duration, it’s probably ok to keep taking it. If it is not effective, there is probably no need to keep taking it.
• Only begin with one supplement or medication at time. If you try multiple things at once, it will be difficult to determine which helped or may have caused side effects, which may lead to taking unnecessary medications.

For NADH in particular, it is not part of the standard treatment regimen in long COVID, although it can be purchased as a nutritional supplement in most pharmacies or vitamin stores without a prescription. There is little potential harm in moderate NADH supplementation, as it is well-tolerated; however, evidence does not demonstrate any definitive benefit for chronic fatigue syndrome. Data shows that NADH may lead to small benefit in symptom improvement, such as reduction in anxiety, in chronic fatigue syndrome, though studies cite small sample sizes. NADH has not been studied for long COVID specifically.

There are currently no FDA-approved treatments for long COVID. Current management consists of treating end-organ damage with evidence-based therapies for those specific organs (e.g., heart failure or chronic kidney disease), energy management, intentional rehabilitation, such as physical therapy, and management of symptoms.

Ivermectin is a controversial medication, as it has exclusively been studied for treatment of the initial COVID-19 illness; however, in high-quality research, it has not shown any benefit. Currently, the National Institutes of Health (NIH), Infectious Disease Society of America, and other major guidelines recommend against the use of ivermectin for COVID-19 infection.

Some healthcare providers have publicly recommended ivermectin for long COVID, although they do not cite any evidence to support its use, and it is not widely accepted by most physician groups. Although ivermectin is generally safe, the Post-COVID-19 Program does not recommend taking it for the treatment of long COVID and would only recommend taking it as part of a clinical trial.

Hyperbaric oxygen is a treatment in which preliminary research shows it can help fatigue and brain fog symptoms in patients with long COVID. While the research is high quality, the trial was very small. Therefore, it’s only fair to say that it is a promising and preliminary treatment; we do not know if it will help all types of patients with long COVID. At the Post-COVID-19 Program, we do not recommend patients begin with this treatment; however, it is something to potentially discuss with your healthcare provider if of interest.

The hyperbaric oxygen protocol that was studied included 40 daily sessions, 5 days a week over 2 months. Sessions were 90 minutes each, and participants received 100% oxygen by a face mask with the chamber pressure at 2 atmospheric pressures (2 ATA). The link to the study in Nature can be found here.

This is an intensive 2-month regimen that requires a significant commitment of time and money. Unfortunately, many insurance companies do not cover hyperbaric oxygen for the treatment of long COVID at this time; therefore, there may be significant out-of-pocket costs (upwards of thousands of dollars) associated with the course of treatment. Overall, we believe hyperbaric oxygen is promising; however, with the limited research, we cannot guarantee results. The treatment is safe, resulting in very few side effects, but patients with specific lung diseases, such as a history of pneumothorax or taking certain chemotherapies, should discuss the therapy with their healthcare providers before receiving it. If you are interested in hyperbaric oxygen, there are multiple facilities in Central Texas that have hyperbaric chambers. UT Health Austin does not provide hyperbaric oxygen directly. We recommend utilizing treatment protocol that was studied to avoid receiving additional infusions or other therapies that may be sold as a package at these facilities.

There are currently no FDA-approved therapies for long COVID. Research trials are ongoing to determine if low-dose naltrexone is effective for long COVID. While some initial reports are promising, the science is inconclusive. High-dose naltrexone (e.g., 50 mg a day) is currently used by prescription for the treatment of alcohol or opioid use disorder because of its effect at blocking opioid receptors in the body. Low-dose naltrexone (from 0.01-16mg) is thought to have anti-inflammatory effects and may desensitize the pain response for patients with nerve pain. Low-dose naltrexone has been used in small trials to treat illnesses such as myalgic encephalitis/chronic fatigue syndrome and multiple sclerosis, which has resulted in some benefit. Therefore, it is hypothesized that low-dose naltrexone may help with fatigue and nerve pain symptoms associated with long COVID. The dosages being studied for long COVID range from 1 mg to 4.5 mg daily. Although we highly recommend that if using this medication for long COVID, you participate in a research trial, it may also be available “off-label,” meaning it can be prescribed by a healthcare provider even though it has not been studied or approved by the FDA for that specific condition or dosage.

At the Post-COVID-19 Program, we do not recommend most patients begin with this treatment; however, it is something to potentially discuss with your healthcare provider if of interest. Low-dose naltrexone is available by prescription only, and because it is not manufactured at low doses, it will require a special compounding pharmacy to formulate the tablets.

Individuals who have had COVID-19 should get vaccinated once they do not have a fever and their healthcare provider believes that they have recovered from the initial infection. This timing is usually 10-20 days from the time symptoms begin for those individuals who were not hospitalized. For individuals who received monoclonal antibody or convalescent plasma treatment, they should wait 90 days after treatment completion to ensure that the body produces its own antibodies. We recommend all patients with long COVID receive booster vaccines when they become available unless they have had an adverse effect to a COVID-19 vaccine in which case it should be discussed with your healthcare provider.

There have been studies reporting that a small portion (~25%) of individuals with long COVID may experience improvement of their symptoms after COVID-19 vaccination. There is a smaller portion (10-15%) who may experience worsening of their symptoms. However, most individuals will experience no changes in their symptoms aside from any temporary side effects of the vaccine (e.g., pain, redness, or swelling at the injection site; fatigue; headache; chills; muscle pain; or joint pain), which is normal as vaccines are designed to elicit a slight immune response. Therefore, it is recommended that most individuals receive the COVID-19 vaccine after their initial infection because it can raise their immunity by 25- to 1000-fold and prevent reinfection.

Overall, most experts recommend vaccination and boosters for patients with long COVID, as the risk of you’re the symptoms getting worse from reinfection is higher than the risk of adverse effects from the vaccine. For patients who experience worsening of their symptoms or severe side effects from the vaccine, there are alternative options that offer protection, including long-acting monoclonal antibodies, such as Evusheld, that are available and highly effective at preventing reinfection. If your long COVID symptoms got worse following a COVID-19 vaccine or booster, it is recommended that you discuss whether to receive further doses or alternative options with your healthcare provider.

Vaccination clearly reduces the risk of developing long COVID, with research of large populations in Britain and Israel showing that the risk is reduced by at least 50% and in some studies up to 80%. COVID-19 vaccines reduce the risk of developing severe illness, which is the greatest risk factor for developing persistent symptoms, making COVID-19 vaccination the best tool for preventing long COVID currently. However, vaccines do not fully eliminate the risk of developing long COVID, and there are many reports of persistent symptoms following breakthrough infections.

The use of COVID-19 vaccines to treat long COVID is an area of active research. While initial studies show that some patients with long COVID have experienced significant improvement in their symptoms following the vaccination series, most patients have not experienced changes in their symptoms. In these same studies, there was a small portion of patients who reported worsening symptoms of long COVID following vaccination. It is unclear which patients will experience improvement in their symptoms after receiving the vaccine.

COVID-19 vaccines are safe and effective. Severe reactions after vaccination are rare, with the most common being myocarditis in young men after receiving the Pfizer-BioNTech or Moderna series (mRNA vaccines). Most patients recover quickly without long-term complications. The J&J and AstraZeneca vaccines (adenovirus vaccines) have been linked to thrombosis with thrombocytopenia syndrome (TTS), an extremely rare clotting disorder, and Guillan-Barre Syndrome (GBS), a rare disorder in which the body attacks nerve cells and causes paralysis. Adenovirus vaccines or boosters are no longer recommended, and those complications have not been identified in mRNA vaccines.

A review of clinical trials that included more than 45,000 participants showed the rate of any reported adverse effects was 46% with the vaccine (active treatment) and 35% for participants who received placebo (inactive treatment). The most common adverse effects for participants who received placebo were headache and fatigue.

As COVID-19 vaccines and boosters become more common, it is difficult to distinguish whether common symptoms are related to the vaccine or other causes. There are reports of patients developing symptoms similar to long COVID following vaccination, and the National Institutes of Health (NIH) is investigating these cases. Some researchers have hypothesized that the COVID-19 virus can induce autoimmunity, which theoretically the vaccine could do the same. This has not been definitively proven though, and reported cases remain extremely rare. Therefore, since the risk of developing long COVID from an infection is between 5-30%, experts agree that the benefits of the vaccine heavily outweigh the risks.

If an individual is concerned that vaccination has caused an adverse effect, it is highly recommended to report it to the Vaccine Adverse Event Reporting System (VAERS) so it can be investigated by the CDC or FDA. Individuals who have experienced adverse effects from the vaccine still have options available to protect themselves from COVID-19 infection, including long-acting monoclonal antibodies, such as Evusheld.