After recovering from COVID-19 (SARS-CoV-2), approximately 10-30% of individuals who contract the virus will continue to experience symptoms. This is referred to as “long COVID,” ”post COVID,” or “long-haul COVID.” So what is long COVID, what causes it, and how can it affect the body long term? Let’s take a closer look.
What is Long COVID?
“Long COVID” is a term used to describe the lasting effects COVID-19 can continue to have for weeks, months, or even years beyond the initial or acute infection. Damage to various organs, including the heart, kidneys, lungs, and brain, are common signifiers of the condition.
Someone experiencing COVID-19 symptoms anywhere from four weeks or more following the initial infection, where symptoms can not be otherwise explained, is likely suffering from long COVID. Research to better define long COVID and its symptoms are ongoing. Some physicians equate this paradigm to chronic heart failure (CHF) after acute heart failure or decompensation.
How Can Long COVID Affect the Body?
As we emerge from a pandemic that caught much of the world off guard, governments and scientists are now starting to systematically study the area. Unfortunately, this means there is currently a lack of knowledge regarding COVID-19’s possible long-term effects. What we know right now is there are over 200 symptoms that can be present in long COVID patients. That said, those same symptoms can present in many other illnesses. This can make long COVID hard to definitively diagnose.
Long COVID and the Physical Body
The most common long COVID symptoms are fatigue, shortness of breath, loss of smell and taste, cognitive limitations, and muscle pain. Other symptoms include but are not limited to:
- brain fog (difficulty thinking or concentrating)
- bowel incontinence
- changes in order or taste
- chest or stomach pain
- difficulty breathing
- difficulty with motor function or speech
- erectile dysfunction
- impaired respiratory function
- issues with sleep
- heart palpitations (racing or pounding heart)
- fatigue or exhaustion
- memory loss
- menstrual cycle fluctuations
- mood swings
- muscle or joint pain
- persistent coughing
- pins and needles sensation (neuropathy)
- post-exertional malaise (symptoms that worsen after physical or mental strain)
- rashes or other skin irritations
- shortness of breath
Long COVID and Diabetes
When thinking of long-term COVID-19 symptoms, people first think of cognitive issues, fatigue, or breathing issues. While those are common symptoms of long COVID, some individuals who survive COVID-19 are being diagnosed with diabetes. Diabetes is a chronic condition that affects how your body turns food into energy and occurs either when the pancreas is no longer able to produce insulin or when the body can’t make use of the insulin it does produce.
This new symptom is leading scientists to believe there are likely several different forms of long COVID. One particular type of long COVID is thought to be distinguished by cardiometabolic complications that appear after COVID-19. According to a recent study, individuals who have recently recovered from SARS-CoV-2 infection are 40% more likely than uninfected individuals to be given a new diagnosis of diabetes. This will require further confirmation in larger trials.
This elevated risk correlates to roughly 1% of people (8.28 per 1000 individuals at 12 months) who have had COVID-19 developing diabetes and would not have otherwise, potentially resulting in millions of new cases across the world. Most participants of the study were diagnosed with Type 2 diabetes rather than Type 1. Some scientists believe COVID-19 and long COVID may trigger a brand new form of diabetes in which specific cells may cause blood sugar levels to rise rather than lower them. Research is ongoing.
Warning signs that an individual may have developed diabetes after a COVID-19 infection include:
- cuts, bruises, and other wounds are slow to heal
- inability to regain weight that was lost while ill
- excessive fatigue
- increased thirst connected to blurred vision
- frequent/increased need for urination
If you suspect you may have developed diabetes after a COVID-19 infection, it’s important to contact your healthcare provider as soon as possible. High blood sugar levels that go unchecked can cause irreversible harm to the body’s blood vessels and nerves, which can negatively affect the heart, kidneys, eyes, and more.
Long COVID and Cancer
We know from previous research that certain viruses may cause cancer. Examples include Human papillomaviruses (HPV), Epstein-Barr Virus (EBV), Hepatitis B and C, Human immunodeficiency virus (HIV), and more. In order to replicate and create new virions, a virus needs to enter a living cell and commandeer the cell’s machinery. Some viruses carry out this action by integrating their own DNA (or RNA) into the host cell’s. The host cell may be pushed toward developing cancer if the DNA or RNA has an impact on its genes.
Though not yet proven, some speculate a long-term inhibition of protein p53 by SARS-CoV-2 could be cancer-causing. Because it controls the expression of about 500 target genes and is a crucial component of the apoptotic (cell death) signaling pathway, the onco-suppressive protein p53 plays a part in cell-cycle arrest, cell aging, cell death, and other processes. In order to determine whether or not p53 is dysregulated during acute SARS-CoV-2 infection and long COVID, the study looked at three gene-expression datasets. Long-term p53 deficiency could be a considered risk factor in carcinogenesis.
Another article from the NIH suggests long COVID may make recovered patients more prone to developing cancer and hasten the progression of the disease. Mounting data supports this theory, showing how SARS-CoV-2 can modulate oncogenic pathways, increase chronic low-grade inflammation, and result in tissue damage. Further research is ongoing.
Long COVID and Suicidal Ideation
Studies on long COVID and its connection to suicide are still in their early stages. This means there is no current authoritative data on the frequency of suicides among sufferers. That said, there are hundreds of documented cases that have popped up over the last two years where long COVID patients who are suffering from the more extreme side of their symptoms (loss of cognitive function, muscle pain, exhaustion, and more) admit to experiencing suicidal ideation. In fact, a poll conducted by the long COVID advocacy group SURVIVOR CORPS (May 2022) revealed 44% of participants had thought about suicide, which is significantly higher than the 18% reported just one year prior. There are also many individual cases of suicide in these patients reported on social media and in the literature. The causal relationship and potential mechanisms are under study.
Institutions such as the NIH in the U.S.,, Britain’s medical data-collection agency, and others are starting to look into a possible connection based on evidence of an increase in the incidence of depression and suicidal thoughts among those with long COVID, as well as an increase in the number of known fatalities.
One of the main issues researchers are investigating is whether the virus has the ability to change an individual’s brain biology or the loss of ability to function as they had pre-COVID-19 triggers suicidal ideation. With other chronic medical conditions, the latter has been seen. For instance, there is a strong correlation between brain inflammation and pain disorders (both of which have been linked to long COVID in numerous studies).
People with chronic illnesses are more likely to have suicidal thoughts, attempt suicide, and actually commit suicide—-COVID- related or otherwise. This report from the health data firm Truveta states that patients with long COVID were nearly twice as likely to receive a first-time antidepressant prescription within 90 days of their initial COVID diagnosis when compared to other populations. More than 1.3 million adults with a COVID diagnosis and 19,000 with a long COVID diagnosis between May 2020 and July 2022 were included in the analysis.
If you are experiencing symptoms of suicidal ideation, whether or not you are also experiencing known symptoms of long COVID, it’s important to reach out urgently to your healthcare professional. However, recognize that physicians are still learning about Long COVID, and many may not be as well informed as you would like or hope for.
What Causes Long COVID?
Given the wide range of long-term symptoms, scientists believe there may be more than one cause of long COVID.
Originally, experts felt an overactive autoimmune response to the virus underlying COVID-19 causes the immune system to produce autoantibodies that gradually attack the body’s tissues and organs. But they’ve since found that long COVID actually seems to be associated with a suppressed immune system. While blocking its activity, the antibody can stabilize CCR5 expression on the cell surface, leading to the upregulation of other immune receptors and processes.
One particularly intriguing concept is that once infected, many patients harbor the virus for extended periods of times. The more research scientists complete, the more they are concluding that the lingering virus is likely the dominant cause of long COVID. According to recent research, the SARS-CoV-2 spike protein can be found in the blood of long-term COVID patients up to one year after infection but not in those who have fully recovered. Scientists have also discovered the virus in tissues such as the brain, lungs, and lining of the stomach and intestines many months after acute infection. These findings importantly point to possible treatment options – anti-viral medicines (e.g., Paxlovid) or anti-inflammatory medicines.
Another hypothesis is that long COVID symptoms are caused by organ damage the initial or subsequent infections may have caused. With reference to the cognitive or nervous system impact, this has been referred to as a neuroinflammatory disease – one of the most troubling of the long-term symptoms of COVID-19.
How Long Does Long COVID Last?
Unfortunately, because the condition is still relatively new, we don’t have a full understanding of how long the effects of long COVID last. What we do know is recovery times vary from patient to patient.. Reported cases have lasted anywhere from several weeks to several years. In some cases, patients report symptoms disappearing and reappearing over time, perhaps due to fluctuations in the level of residual virus in the body..
Are COVID-19 Patients Contagious?
The duration of COVID-19 patients’ contagiousness is a complex and hard question to answer with a precise time frame. Varying levels of natural immunity brought on by prior infection, primary vaccination status, use of booster vaccinations, and emerging variants can all affect how quickly someone can clear the virus from their system. The Center of Disease Control (CDC) states that in general, those with COVID-19 infections should remain isolated for at least five days, and those with a more severe COVID inflection or those who are immunocompromised should remain isolated for longer periods of time. There is controversy as to how long patients should be quarantined following testing positive for COVID-19, but in any case, the best way to remain safe is to perform rapid COVID-19 testing at home and consider yourself as contagious (able to pass the virus to others, including family members) until testing negative for two consecutive days. .
However, long COVID patients are no longer in the contagious stage and can not spread the virus to others unless reinfected.
If I Have Long COVID, Will I Test Positive?
After the initial positive COVID test and illness, results with PCR tests performed in clinical laboratories may continue to be positive for several weeks. Positive COVID tests beyond 90 days are most likely the result of a new infection. Long COVID itself is not contagious as it simply refers to the persistent damage and continued symptoms caused by the original infection.
Is There A Specific Test for Long COVID?
Since long COVID is a newly developed condition and isn’t yet completely understood, there is not currently a single diagnostic test. Researchers are in the process of looking for ways to distinguish between long COVID and other illnesses.
Is There Treatment for Long COVID?
Unfortunately, there are no proven treatments for long COVID at this time. Uncertainty regarding the underlying cause of long-COVID has been a major obstacle in developing effective treatments.
A handful of treatment trials are currently exploring the use of various currently available medicines. The most promising approach is the use of the anti-viral medicines approved for use in the acute phase of COVID-19, such as Paxlovid, which should lower the levels of residual virus in the body and potentially eliminate the ongoing impact of exposure to the virus in various organ systems. . While most trials are small and in the early stages of implementation, they are steps in the right direction. Numerous treatment theories have gained traction over the last two years, and researchers are hoping to gain evidence of their effectiveness to create and offer helpful treatment options.
As previously stated, there is growing proof that residual SARS-CoV-2 may continue to have long-lasting effects on the immune system. Additionally, the infection may produce antibodies that mistakenly target the body’s own protein and potentially cause harm years after the initial infection. Each hypothesized cause comes with its own treatment hypothesis. For example, a misguided immune response may be stopped by immunosuppressive medications, whereas microthrombosis may be prevented by medicines that target the clotting cascade, such as in pulmonary embolism and deep venous thrombosis. .
The NIH RECOVER project (which has received $1.15 billion in funding) is the most heavily funded research project for Long COVID, but it has yet to test any treatments. Researchers agree that when the results of the pilot projects become more promising, larger trials should be done quickly and expansively. The pathology underlying long COVID is becoming much clearer to physician-scientists working in this field. Important trials for medications that target blood clots, the immune system, or latent coronavirus fragments are expected in the upcoming year.
How Can I Prevent Long COVID?
COVID-19 prevention and long COVID prevention go hand in hand. There are several things you can do to help reduce your chances of a COVID-19 infection.
COVID 19 Vaccine and Boosters
The original goals of the COVID-19 vaccines were to prevent serious illness and death. Fortunately, these goals have largely been met; vaccines and boosters have been proven to reduce the overall risk of COVID-19 infection, as well as the seriousness of the illness if contracted.
The COVID-19 vaccine also appears to reduce the risk of long COVID after recovering from a breakthrough COVID-19 infection, though having the vaccine does not guarantee you won’t contract the illness or experience long-term effects. Those who are unvaccinated are at a much higher risk of developing long COVID. This is supported by data from the Office for National Statistics (ONS), which demonstrates that receiving the vaccine twice could cut the risk of developing Long COVID by 40% (in people 18-69 years of age).
Masks and COVID-19 Cautiousness
The likelihood of spreading and contracting COVID-19 is decreased by wearing a properly fitted mask, along with vaccination, self-testing, and physical separation, which helps to protect you and others. It is also a good idea to check your local COVID-19 community level for information on COVID spikes in your area and additional precautionary measures you can take but keep in mind that wearing a mask indoors or in crowds is the best and simplest way to decrease the spread of the disease.
How Many People Have Been Affected by Long COVID?
The University of Washington’s Institute for Health Metrics and Evaluation (IHME) estimates that within the first two years of the pandemic nearly 145 million people worldwide have developed long-lasting symptoms.
What Support Is There for Long-COVID Patients?
Levels of support for those suffering from long COVID vary across the world. In the U.S., the current administration has released a Memorandum on Addressing the Long-Term Effects of COVID-19 (which calls for a government-wide response). This memorandum includes two major reports:
- Services and Supports for Longer-Term Impacts of COVID-19: Outlines federally funded support services for those affected by COVID-19 and long COVID.
- The National Research Action Plan on Long COVID: Proposes an extensive and equitable research strategy to guide our country’s response to long COVID.
Emotional support and resources are available through additional support groups such as the Survivor Corps and Long COVID Support. The Administration for Community Living, which is an operating division of the U.S. Department of Health and Human Services also released this document that outlines “How ACL’s Disability and Aging Networks Can Help People with Long COVID.”
The information above was last updated/accurate as of 9/14/2022. As research continues and information becomes available, updates may occur.