If you are continuing to experience COVID symptoms months after infection and believe that you may have Long COVID, you are not alone. While studies estimate 10-30% of people with COVID-19 will go on to experience Long COVID, that number may increase as we learn more about the virus, the new variants, and how the virus is affecting the body. So how exactly could Long COVID impact our lives?
How Common is Long COVID?
- A systematic review published on October 13, 2021, showed that more than 50% of COVID survivors suffer from symptoms at 6 months.
- Director of the Post-COVID Recovery Center in Staten Island University Hospital Thomas Gut, DO, reports “Data suggest that anywhere from 30 to 75 percent of patients will experience Long COVID symptoms that can persist anywhere from 1 month to a year.”
- A study looking at healthcare workers recovering from a mild to moderate COVID case showed more than 10% experienced at least one Long COVID symptom lasting for at least 8 months that disrupted their home, social, and work life.
- Long COVID prevalence estimates based on positive COVID numbers suggest the possibility of 4-23M Americans having Long COVID, with between 23-140M cases worldwide.
Where Can COVID Long Haulers Find Support?
Many patients are turning to each other for support and understanding through a variety of different online support groups. In many cases, these groups offer more than just a connection between patients. They also offer patient advocacy, promote and participate in COVID studies, and help educate the medical community. Here are some of the top Long COVID support groups, as well as agencies offering Long COVID support and information.
- Survivor Corps
- Survivor Corps Facebook
- Body Politic Support Group on Slack
- Body Politic
- Long COVID Support Group (Facebook)
- COVID-19 Long-Haulers Discussion Group
- The Long COVID Alliance
- COVID-19 Longhauler Advocacy Project
- Young COVID Survivors (Under 35)
- COVID Patient Recovery Alliance
- Administration for Community Living’s Guide for Community Resources
- U.S. Department of Labor Coronavirus (Long COVID) Resources
- Office of Special Education and Rehabilitative Services Long COVID – Support for children, students, educators, families, and schools navigating Long COVID
- PASC Dashboard – Provides a dashboard showing estimated Long COVID cases by state
- State and Territory Assistive Technology (AT) Act Program – Providing assistive technologies for those living with Long COVID disabilities
What is the Emotional, Financial, and Economic Impact of COVID and Long COVID?
Long COVID is the largest mass disabling event in modern world history. In fact, COVID is 6 times more deadly than the polio outbreak in the 1940s and 1950s. While SARS-CoV-2 meant lockdowns, business closures, stress on hospitals and the medical community, and deaths around the world, the acute viral infection was just the beginning. With Long COVID, we are likely to see impacts on jobs and the economy, healthcare, and medical practice alongside the personal losses of people with Long COVID and their families.
Between 10-30% of COVID patients could experience symptoms of Long COVID.
To better understand this impact, we look closer at the current numbers. Based on the CDC Data Tracker (December 18, 2021), the current number of COVID cases in the United States is 50,479,372. If we look at 10-30%, we find 4,047,937 to 15,143,812 possible Long COVID cases in the United States alone. However, if we look globally, the number is even more concerning. The WHO Coronavirus (COVID-19) Dashboard on the same date showed the global numbers at 271,963,258. At a rate of 10-30%, we could be currently looking at 27,196,326 – 81,588,977 cases of Long COVID in the world. But the risk isn’t over as more cases add to the list every day.
So, what does this mean and how will it impact our world?
Long COVID Impact on Individuals and Families
For individuals and families, this means the arrival of a huge wave of chronically ill Americans. How many of these people will require short-term disability (if they can receive approval)? Will they ever be able to return to the same level of employment? How many will become permanently disabled? Will children have to live with a chronic condition their entire lives?
As the numbers grow, researchers and doctors are looking to answer these questions. Meanwhile, Long COVID is already impacting families across the country. This impacts leaves many unable to make their monthly bills, maintain housing, and provide food for their families. While the federal government has declared Long COVID a possible disability, many patients are experiencing roadblocks in receiving aid. Many patients were unable to obtain initial COVID tests during the early days of the pandemic. This lack of a positive COVID test makes it hard to prove disability, despite a Long COVID diagnosis. This loophole leaves many without any support or answers and no way to provide for their family. Long COVID patients – like many with chronic conditions – hear that they are not sick enough for disability, despite being too sick to work.
For individuals and families, the loss of the ability to work can lead to lost income, home foreclosure, bankruptcy, and the loss of health insurance that so many need at this crucial time.
Long COVID Impact on Children
No one is safe from the risk of Long COVID, including children. The COVID pandemic has already been difficult for children. With family members passing away, schools closing and then opening in a virtual setting, changes to their regular routine, feelings of isolation, and many other challenges, these last couple of years have already made their mark.
Children with Long COVID face their own series of challenges. Brain fog and other cognitive symptoms can make it challenging to focus in school. Post-exertional malaise can mean it’s hard for kids to participate in the activities and play that they enjoy. Educators will require additional training in order to support children in the classroom.
Long COVID Impact on Mental Health
The COVID pandemic introduced an increase in mental health challenges worldwide. People were isolated during lockdowns and faced the stress of the unknown. For many, a Long COVID diagnosis can lead to additional mental health challenges. Many Long COVID patients suffer from physical symptoms that can become overwhelming, leading to the development of psychological symptoms. An early study showed that Long COVID patients suffer from an increased risk of depression and PTSD. In addition, in a letter published in May of 2020 Leo Sher, a professor of psychiatry at the Icahn School of Medicine at Mount Sinai, suggested that all COVID-19 survivors and Long COVID patients be regarded as an elevated suicide risk and may need long-term psychological interventions as a part of their treatment plan.
Some common examples of altered mental health in connection to Long COVID can include:
- Directly neuropsych (completely embodied, neuroinflammation contributing to neuropsych)
- Pre-existing medical condition (anxiety and depression pre-COVID, for example, becoming one of your many continuing health concerns)
- Pandemic isolation, break of the usual routine, decrease in social time/family time
- Coping with a life-changing chronic illness that means you have to rework your entire identity
Long COVID Impact on the Job Market
The impact of Long COVID is going to be detrimental to the workforce. A recent study showed that 23% of Long COVID patients are unable to work. In addition, 45% must reduce their work schedule. Based on the number of Long COVID patients, this means the current workforce could lose 931,025 – 3.5 million employees. And this is only those that are unable to work at all. Others may still be able to work, but may need to reduce hours or have special accommodations.
This major impact on the workforce will require changes from employers, allowing for a more flexible workplace. Changes such as increased sick leave, reduced daily hours, increased working from home, the creation of rest areas for employees, and employee support groups can help retain employees while they fight and recover from Long COVID. Without implementing these changes, employers may experience staffing shortages and loss of additional employees. One more sentence to punch this up
Another trend seen with Long COVID is the fact that it is not just affecting older adults and those with preexisting conditions. In fact, the majority of people with Long COVID appear to be in their 20s, 30s, and 40s, who were active and healthy before COVID. They have become disabled at the early stages of their professional lives; Long COVID has complicated their ability to advance in their career or even return to work at all.
Long COVID Impact on the Health Care System
The COVID pandemic has already taken a huge toll on the healthcare system worldwide as patients battled the initial SARS-CoV-2 virus, ICUs were overrun, and hospitalizations reached record numbers. Unfortunately, it isn’t over yet and Long COVID patients will also alter healthcare as we know it. Long COVID, or PASC, affects multiple systems throughout the body, which means that many different medical specialists are necessary for care. People with Long COVID need multidisciplinary care and, ideally, need that care coordinated under one roof. For this reason, researchers and physicians argue that multidisciplinary clinics specializing in Long COVID like RTHM, are necessary to provide whole-patient care, reducing the need for delays that arise from referrals and ensuring patients receive the care they need when they need it.
Overwhelmed Medical System and a Learning Curve
Unfortunately, in an already overwhelmed health care system, the ability to create enough Long COVID specialty clinics may be difficult. Patients are often told they will have to travel hundreds of miles for treatment. Others find that they are on a waiting list that is months to up to a year long. Those that never received COVID positive tests (when tests were unavailable) are not qualifying for treatment at a Long COVID clinic. This is making treatment even more difficult for both the patient and healthcare professionals.
Finally, we are learning more and more about Long COVID every day, and this means that physicians are also learning. While there are no FDA-approved treatments for Long COVID, physicians and researchers are working together to determine the best options to reduce symptoms and improve quality of life. Many clinicians were not familiar with post-viral chronic complex diseases before Long COVID. Others may feel unsure of how to help. This is why the experience of clinicians who have treated other post-viral chronic complex diseases – like ME/CFS, POTS, and MCAS – is more important than ever.
Clinicians new to the arena of post-viral disease may need to seek medical education opportunities. CMEs, or continuing medical education credits, are required for US clinicians to keep their licenses current. Pursuing these opportunities to learn about Long COVID and manage the cases of patients with chronic complex disease can be challenging given clinicians’ already-limited time.
Children and Long COVID
While there were fewer cases in children than adults at the start of the pandemic, COVID cases are now more likely to be children than adults. While children under the age of 18 make up only 22.2% of the US population, 23.6% of current cases are children. Despite their relatively greater risk, lower numbers of early cases led many to believe that kids were safe from COVID, and the medical focus turned to adults and the medically compromised. However, the emergence of different variants and lower vaccination rates in children have contributed to a rise in pediatric cases. This has the medical community focusing on the risks of Long COVID in children and teens.
Unfortunately, most of the studies looking at Long COVID focus on adults. At this time, the research on pediatric Long COVID is limited. Some studies show as many as 1 in 7 children positive with COVID will experience symptoms at 3+ months. A new, long-term study from the NIH’s National Institute of Allergy and Infectious Diseases (NIAID) and their Researching COVID to Enhance Recovery (RECOVER) Institute recently launched and is following up to 1000 children over the next three years. The goal of this study is to learn more about Long COVID and the long-term consequences of SARS-CoV-2 infection in children. NIAID Director Anthony S. Fauci, M.D. states:
“Although we know that children are vulnerable to COVID-19, we still do not have a clear picture of how COVID-19 affects them in the long term. In adult patients, the long-term sequelae of COVID, including post-acute COVID-19, can significantly affect quality of life. Our investigations into the pediatric population will deepen our understanding of the public health impact that the pandemic has had and will continue to have in the months and years to come.”
Long COVID Symptoms in Children and Adolescents
Long COVID symptoms in children, similar to those in adults, vary widely. However, children are more likely to experience chest pain, cough, exercise-induced dyspnea (labored breathing), and a loss of taste or smell, though this symptom is most often seen in adolescents. In addition to these symptoms, children can also experience fatigue, brain fog, anxiety, headaches, sore throat, and joint pains. In many cases, children are unable to pinpoint specific symptoms but will express a feeling of generalized achiness and an inability to perform routine tasks or exercise (sports) as they did prior to COVID infection. A feeling of being more sick and/or a flare of their usual symptoms after physical or mental activity (sports, social interactions, focusing on a school assignment) is also common; this is called “post-exertional malaise”.
Long COVID, Children, and Education
The COVID pandemic altered the education system for many children. Traditional classrooms switched to online, at-home learning. This took a toll on many children as they adjusted to a new learning format. As schools began returning to normal, children had to make additional adjustments, such as masks and regular COVID testing. Educators work to help children adjust to these changes, but the addition of Long COVID adds additional concerns.
With the federal government declaring Long COVID a possible disability, educators can offer modifications for students. However, we still don’t understand Long COVID. Symptoms change on a daily basis and physicians have no idea how long these symptoms may last. This proves difficult when trying to implement regular changes. In addition, because little is known about the condition, parents may face roadblocks from their local schools when trying to establish modified schooling for their children. Parents must remain vigilant as their children are eligible for these services as per the new guidelines.
“Students with disabilities—including those whose long COVID is a disability—have a right to be free from discrimination in school. Federal disability laws, such as Section 504, guarantee equal opportunity to learn for students with disabilities. OCR is committed to enforcing Section 504 and ensuring that all students with disabilities have the supports and services needed to fulfill the law’s commitment.”—Suzanne B. Goldberg, Acting Assistant Secretary for Civil Rights
“Long COVID is an emerging issue that may affect many children (and educators) across the country. Early intervention and local educational agencies need to ensure that children who are living with impaired development or health due to long COVID that is a disability are identified and are provided the appropriate services and supports covered under IDEA.”—Katherine Neas, Office of Special Education and Rehabilitative Services
The Impact of Long COVID on Medical Practitioners
Our goal at RTHM is to focus on patient care, which includes providing educational information for physicians looking to provide more targeted care for their current Long COVID patients while we learn more about this condition.
What Patients Want Physicians to Understand
Patients with Long COVID are the experts of their own illness. This is a profound statement! The idea that patients living with Long COVID understand their symptoms and their body is something that they hope physicians take into consideration when they come in for treatment. While there is no cure for Long COVID, there are still many things that you as a physician can do to improve your patient’s quality of life. Patients are simply looking for help and, for the most part, many understand that a cure is not yet within reach. However, activity management and treating the patient’s most troublesome symptoms can go a long way.
We are all learning about Long COVID and other post-viral chronic complex diseases, including what treatments are most successful. As a physician, it is important to validate Long COVID patients and be willing to simply say, “I don’t know, but I am working to find out,” when it comes to their treatment. Harvard Chan School of Public Health’s presentation, Understanding Long COVID: The Unseen Public Health Crisis, is a fantastic resource for both physicians and patients on the scope of Long COVID and Long COVID care in this time of uncertainty.
Things to Consider When Treating Patients with Long COVID
Long COVID is requiring physicians to change the way they treat patients. When it comes to treating Long COVID patients, there are three considerations to keep in mind.
- Consideration 1 – Listen. Validate. Acknowledge.
- Consideration 2 – SARS-CoV-2 can damage every organ and system of the body. Symptoms can be broad or narrow and constant or waning. Vaccines may help some patients, while making others worse. Determining the symptoms that most impact the patient’s quality of life and addressing these in partnership with the patient is the end goal until the day there is a cure.
- Consideration 3 – Patients with Long COVID understand this is a challenging disease to address because of its waxing/waning, multifaceted nature. That means part of the clinician’s job is to work with the patient long-term, listen carefully regarding medication efficacy and side effects, titrating up or down or changing interventions as necessary, being clear that the path to better wellness requires time, attention, and patience on the part of both the patient and their clinician. It is important to remember that Long COVID is difficult and often scary, and that the diagnosis is life-changing. As a physician, you have the ability to form a partnership with your patient that can be rewarding.
- Consideration 4 – Don’t promise too big (something about 5% recover after the first year or two, something about how ‘attitude’ towards recovery doesn’t really matter, it’s not your job to police ‘attitude’.)
RTHM Is Here to Help Reduce the Long COVID Impact on Physicians and Patients
Long COVID patient care requires a multidisciplinary approach that many physicians are unable to facilitate. As a physician, if you are seeing Long COVID patients in your practice and are not able to attain regular referrals or manage treatment options alone, RTHM can help. You can refer your patient to us and our team will work with you to create a coordinated care plan.