This expertise is provided by Lauri Pasch, PhD, a UCSF psychologist who has worked with and studied the psychological experiences of many COVID-19 patients, and Lekshmi Santhosh, MD, MA, a pulmonologist and founder and medical director of the UCSF OPTIMAL Clinic, a specialized clinic for COVID-19 patients who have been hospitalized or have persistent symptoms.
What is long COVID?
Most people who have COVID-19 recover within a few weeks. However, as with many other illnesses and infections, we now know that COVID-19 can also have longer-term effects. The term “long COVID” has been used to describe symptoms that continue after the initial acute infection period is over.
According to the U.S. Centers for Disease Control and Prevention (CDC), the most commonly reported longer-term symptoms are:
- Difficulty breathing or shortness of breath
- Tiredness or fatigue
- Symptoms that get worse after physical or mental activities (also known as post-exertional malaise)
- Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
- Chest or stomach pain
- Fast-beating or pounding heart (also known as heart palpitations)
- Joint or muscle pain
- Pins-and-needles feeling
- Sleep problems
- Dizziness on standing (lightheadedness)
- Mood changes
- Change in smell or taste
- Changes in menstrual period cycles
Some patients experience one or two of these symptoms, whereas others experience many symptoms. For some the symptoms are mild, while for others they are severe, debilitating, and keep them from returning to work, family responsibilities, and normal life.
Longer-term effects can occur in people who had severe symptoms at the time of the original infection, but have also been reported in people who had mild or even no symptoms.
The scientific consensus so far: Agreements and disagreements
The World Health Organization recently released a definition of a post-COVID condition that will be helpful in promoting understanding and further research:
Post-COVID condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others which generally have an impact on everyday functioning. Symptoms may be new onset, following initial recovery from an acute COVID-19 episode, or persist from the initial illness. Symptoms may also fluctuate or relapse over time.
Experts around the world are actively studying this topic to learn more about the long-term effects, who is at greatest risk, and how these symptoms can be treated. We do not know if this post-COVID condition represents a distinct syndrome, or if it is similar to other post-viral syndromes.
Another confusing aspect is that some people reporting longer-term effects have never tested positive for COVID-19, but their symptoms may be the result of a COVID-19 infection that was never confirmed due to lack of available testing. This makes defining and researching the issue even more challenging.
In early 2021, National Institutes of Health announced the allocation of a large amount of funding to research the longer-term effects of COVID-19 and develop treatment options.
To date, there is no definitive treatment or guidance for longer-term effects of COVID-19. As a result, doctors are not sure what to suggest to their patients who are suffering with these symptoms. They can offer existing treatments to manage the symptoms, but often doctors do not have any specific ideas about what can be done to address the syndrome as a whole.
New symptoms should not be dismissed as reflective of a post-COVID condition because this could lead new illnesses or conditions to be missed. Patients who have had COVID-19 should seek medical attention for new symptoms even if they are on the list of common post-COVID symptoms.
Psychological aspects of post-COVID conditions
Some post-COVID symptoms are in the mental health arena. The most common of these include:
- Depression or other mood changes
- Concentration or memory problems (“brain fog”)
- Sleep disturbance
We do not yet know what causes these distressing symptoms, but there are three possibilities for why they may occur:
- They could be the result of the specific effects of COVID-19 on the brain, the immune system, or other organ systems.
- They could be the result of traumatic aspects of the experience of having COVID-19. It is well known that long-term hospitalization, particularly in intensive care units, can lead to what is called post-intensive care syndrome, which often includes severe weakness, cognitive problems (including poor concentration), and even post-traumatic stress disorder. This explanation, however, would not explain why severe mental health symptoms occur in people who were not seriously ill at the time of their initial COVID-19 infection.
- Ongoing psychological symptoms could be the result of despair patients experience from long-term breathing problems or fatigue with no end in sight.
The fact that no definitive treatments exist to address long COVID can leave patients and their families extremely frustrated. Some patients feel that their symptoms are dismissed or minimized by their providers, families, or their workplace, leaving them feeling alone and dissatisfied with medical care. Also, some patients feel dismissed when their doctor doesn’t believe their symptoms or when complex medical concerns are attributed only to anxiety.
Most of what we have learned so far about long COVID has come from small studies. One of the most informative to date is a study conducted by Jin Yin-tan Hospital in Wuhan, China and published in The Lancet in August 2021, in which the authors reported on one-year outcomes from the largest cohort of hospitalized adult COVID-19 survivors so far. They compared adult patients who had been hospitalized with COVID-19 to a group of age-matched adults living in the same community who had not had a COVID-19 infection. One year, half of the infected patients had fully recovered, but the other half reported at least one continuing symptom. COVID-19 patients had more mobility problems, pain, anxiety, and depression than control participants.
The study showed that many patients will not fully recover within a year of COVID-19 infection and that mental health symptoms are very significant. Most patients in the study reported receiving no specific treatment program to address their ongoing symptoms, reflective of the fact that no specific guidance is yet available about how to treat them. The study is the best we have so far, but its results are limited to adults who were admitted to the hospital in the early days of the pandemic in China, and thus it does not help us understand the experiences of younger people or those who were not hospitalized.
Will I ever be back to normal?
This is the question that many people suffering with long term effects of COVID-19 are asking their providers and themselves. Not having a clear answer can be extremely frustrating. Many patients fear they will never return to how their lives were before COVID-19. Although evidence suggests that most COVID-19 symptoms improve over time, many patients do still have symptoms one year after diagnosis.
Post-COVID-19 specialty clinics
Most people dealing with longer-term effects of COVID-19 seek the help they need from their own primary care and related specialty doctors. However, many people feel frustrated when they have symptoms and problems in various arenas. In those cases, specialty clinics designed to addressed post-COVID symptoms are extremely helpful. UCSF was one of the first medical centers in the United States to develop such a clinic, the COVID-19 Follow-Up Clinic, where patients can get help and support for all their COVID-19-related symptoms.
Other post-COVID-19 specialty clinics in California include:
- Cedars-Sinai COVID-19 Recovery Program
- Children’s Hospital Long Angeles Long COVID Recovery Care
- Scripps COVID Recovery Program
- Stanford Post-Acute COVID-19 Syndrome Clinic
- UC Davis Post-COVID Clinic
- UC Irvine COVID-19 Recovery Program
- UCLA Post-COVID Clinic
- UC San Diego Post-COVID Care
Long COVID advocacy and support groups
Several advocacy groups have formed to support people who are experiencing long COVID symptoms.
Survivor Corps, the largest of these grassroots groups with over 175,000 members, offers a tool for people to share their symptoms and stories and express their frustration about the lack of available treatment options. The group’s founders have also been instrumental in advocating for more attention and research funding to address the needs of patients. Reports from group member surveys are available on their website.
Another advocacy organization is the Long COVID Alliance.
Support groups have formed around the world to provide people struggling with long COVID the opportunity to connect. These groups serve to ensure people that they are not alone in their suffering and connect them to available resources and information. This is important because many patients have experienced frustration that their doctors do not have solutions to address their symptoms and cannot tell them what to expect or when and if they will return to normal. Support groups include:
It is important to remember that any information source can contain inaccurate or misleading guidance, and thus patients are encouraged to seek multiple forms of information—such as talking to their primary care doctor and reviewing CDC recommendations—before making any medical decisions or using any treatments.