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If you have been having either COVID symptoms or other inflammatory-focused symptoms long after recovering from COVID-19, you’re not imagining things, and you’re not alone. Names for this phenomenon have varied slightly, but it seems patients, doctors and researchers are finally settling on the term “long COVID.” 

Long COVID has been capturing more and more attention as the pandemic rages on. It seems to have entered the center of attention within the health community now that it appears that the worst of the pandemic could be behind us.  

Those who suffer from long COVID know that it’s much more than simply continuing to deal with the symptoms of the virus. The condition can significantly impact quality of life by causing wide-ranging symptoms affecting several parts of the body. As a result, long COVID may even affect someone’s ability to work.  

The Americans with Disabilities Act 

Long COVID patients might find themselves working much more slowly than they did before they had the virus, and they might need accommodations that they didn’t need before so that they can continue working. As a result, we may start to hear people talk about classifying long COVID as a disability under the Americans with Disabilities Act.  

Such classification would require employers to provide reasonable accommodations that would enable long COVID patients to continue working, even if they can’t do everything at the same pace they did before they came down with the virus. 

ADA classification would also mean that employers can’t just cast aside employees who suffer from long COVID. It would offer protection against discriminiation against people with disabilities.  

Senator introduces bill about long COVID 

An important first step has been made in moving toward getting long COVID classified as a disability under the Americans with Disabilities Act. The condition has now captured the attention of lawmakers, which is increasing awareness of this condition even more. Sen. Tim Kaine introduced a bill in early March to help those still suffering from weeks or months after testing positive for COVID-19. 

Kaine has become a major proponent of care for those with long COVID because he himself suffers from it. He tested positive for COVID-19 almost two years ago but continues to suffer from moderate symptoms. Researchers continue to study the long-term impacts of COVID-19 on the body, but it’s clear that more study must be done. 

Kaine offered up the Comprehensive Access to Resources and Education (CARE) for Long COVID Act. It aims to expand research on long COVID and improve access to treatment. If the bill passes, it will create a centralized registry of patients confirmed to have long COVID. 

Researchers will then be able to gather data and information about symptoms and patient experiences, which should enable them to improve treatment for those suffering from long COVID. The findings would be shared with various agencies. 

How many people suffer from long COVID? 

The bill also pushes for education for employers and schools on the impacts long COVID can have on employment and how they relate to disability rights. The bill also calls for partnerships with community-based health organizations to expand treatment access. 

Estimates of how many COVID patients end up with symptoms that last far beyond the few days of illness vary widely. However, as time goes on, it’s looking like larger percentages of people who get COVID are ending up with months or even years of after-effects. 

Some conservative estimates suggest 10% to 30% of COVID patients will end up with long COVID, but as time goes on, it’s looking like the problem is much worse than initially believed. Researchers from the Penn State College of Medicine now estimate that more than half of the 236 million people who have been diagnosed with COVID globally since December 2019 will experience symptoms up to six months after recovering from the virus. 

Symptoms of long COVID 

Many patients don’t even link the symptoms they experience to COVID because many of them don’t match the symptoms they felt due to COVID. However, researchers are discovering that some of the symptoms do line up with those experienced by the millions of people who suffer from autoimmune illnesses. 

According to the U.S. Centers for Disease Control and Prevention, the symptoms of long COVID include: 

• Breathing difficulties or shortness of breath
• Fatigue
• Brain fog
• General malaise after mental or physical activities
• Cough
• Stomach or chest pain
• Headache
• Heart palpitations
• Muscle or joint pain
• Feelings like pins and needles
• Diarrhea
• Problems with sleep
• Fever
• Feeling dizzy when standing up
• Rash
• Changes in mood
• Changes in taste or smell
• For women, menstrual cycle changes

The problem with all these symptoms is that they can make it difficult to reach a diagnosis. All of these symptoms overlap with the symptoms of other health problems, including multiple autoimmune diseases, and many of them are not associated directly with the virus that causes COVID-19. 

Additionally, while it may take up to two weeks for the average person to get over COVID, those with long-haul symptoms may suffer for up to six months or even longer if the virus does permanent damage to their bodies. In fact, some people with only mild cases of COVID or even no symptoms at all could still end up with long-lasting symptoms. 

Categories of long COVID 

Doctors familiar with long COVID break it down into three categories. The first includes patients who never recover completely from the virus and have ongoing symptoms due to direct cell damage. 

The second category includes patients who suffer symptoms related to extended or chronic hospitalization stemming from COVID-19 infection. These patients are in the hospital and often the intensive care unit and remain bed-bound for weeks. They typically suffer from muscle weakness, cognitive brain dysfunction and psychiatric symptoms similar to post-traumatic stress disorder, which doctors refer to as “post-ICU care syndrome.” 

The third category of long COVID patients includes patients who recover from infection with the virus but then have symptoms that appear following their recovery. These patients typically have inflammatory markers and signs that their immune system ramped up but never ramped back down again. The CDC describes this category of patients as suffering from “multiorgan effects” in ways that mimic autoimmune diseases because their immune systems attack their bodies. 

Clues about those at risk for long COVID 

Unfortunately, it may seem like there is no warning for those who suffer long-lasting effects of COVID-19. However, NPR referenced a study that offered some indicators that could reveal who might be at risk for long COVID if they become infected with the virus. One of those indicators is the amount of coronavirus RNA in the patient’s blood in the early days of their infection with the virus. 

The RNA level provides details about what researchers call the “viral load.” Those with a high viral load early in their infection might end up with long COVID, even if their symptoms are mild. Researchers also found evidence of autoantibodies, the antibodies that mistakenly attack the body in those with autoimmune diseases. 

Other risks include reactivated Epstein-Barr virus, which is believed to have infected about 90% of adults at some point in their lives and remains inactive after recovery. Another risk of developing long COVID is Type 2 diabetes. 

The autoimmune link 

One of the most widely held beliefs about autoimmune diseases is that they are sometimes triggered in people after a serious viral or bacterial infection, which tricks the body into attacking itself. Now some researchers are finding that COVID-19 may be one such disease that triggers an autoimmune response. 

Some scientists are looking into the link between long COVID and that autoimmune response. For example, researchers at Cedars-Sinai discovered evidence of an overactive immune response in patients who have had COVID, including those who had only mild cases. 

Additionally, researchers from Penn State have found that the virus that causes COVID-19 can not only enter the nervous system but also live on within it, causing a number of nerve-related symptoms like brain fog, decreased attention and memory impairment. 

This could be why the Australian publicly listed biotechnology company Antisense Therapeutics is collaborating with Dr. Igor Koralnik. A leading researcher in the field at the Northwestern Memorial Hospital Neuro COVID-19 clinic in Chicago, Illinois to undertake a study with the goals to generate new intellectual property around the potential diagnosis and treatment of neurological complications of Long COVID-19 and to assess whether Antisense Therapeutics drug  ATL1102, an RNA inhibitor being developed by to treat a rare neuromuscular disease, could also treat Long COVID-19.

ATL1102 has shown biologic activity in patients with Multiple Sclerosis (MS), an autoimmune disease. As noted earlier there may be a link between Long Neuro Covid and abnormal inflammatory responses; it may even share some of the same virus specific pathophysiological changes as other viral infections including EBV and chronic fatigue syndrome. Patients who had COVID-19 while also infected with EBV – which increases the risk of autoimmune diseases like MS and associated adverse neurological manifestations – had an increased risk of memory loss. This study will look for blood disease markers to help determine if ATL1102 could be used to treat Long Neuro COVID-19.

Why long COVID shares similarities with autoimmunity 

In their study of the autoimmune link with COVID-19 infection, Cedars-Sinai researchers compared blood samples from patients with confirmed COVID infections with samples from healthy patients before the pandemic. They found elevated levels of autoantibodies in every patient with a confirmed COVID infection. 

Scientists have found some of these same autoantibodies in the blood of patients who suffer from autoimmune diseases like rheumatoid arthritis and lupus. Autoimmune diseases occur when the patient’s immune system attacks different parts of their body. 

Dr. Susan Cheng, co-senior author of the study, said they found autoantibody activity like what they have found to be linked to chronic inflammation and injury involving certain organs and tissues like the joints, nervous system and skin. 

Beyond the health implications of long COVID 

While there’s no doubt that long COVID is a real, widespread problem, the millions of people who suffer from it are having difficulties getting help. A growing number of news stories are calling attention to the financial and psychological challenges faced by long COVID patients, who have no safety net, including employment-related protection. 

Long COVID patients are typically not eligible for support from employer-provided disability insurance or other disability benefits or unemployment. Social Security is also not an option for long COVID patients, and not just because it takes multiple denials and years of appeals to secure benefits. 

Social Security is aimed at those who will likely be disabled and unable to work at all for at least 12 months. Some long COVID patients may be unable to work entirely, although the amount of time required to move past this phase varies widely from patient to patient. 

Another issue is that some long COVID patients may be able to handle light, sedentary work, like people with some disabilities, but they may require some accommodations to be able to keep working. Last summer, the Biden administration said that long COVID could fit the definition of disability as stated in the Americans with Disabilities Act, which requires employers to provide accommodations for disabled workers. 

However, neither the White House nor Congress has made any move to classify long COVID as a disability under the act. Only time will tell whether Sen. Kaine’s bill will lead to long COVID being classified as a disability or other support for patients who may be unable to work for several months or longer. 

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