More than 34 million Americans contracted COVID-19 in 2021, and studies estimate that 50% of them will develop post-COVID syndrome, also known as long COVID, a condition that can impact multiple body systems and result in ongoing symptoms, some of which differ greatly from the initial infection. 

Long COVID’s complexity makes it challenging to understand and subsequently treat. While many long-COVID sufferers feel abandoned by the government and the medical community, frenetic research, healthcare, and support service efforts have been underway, and they have been fruitful. 

Progress Made in 2021

Recognition

In April 2021, long-COVID patients–many of whom were not, unfortunately, believed at first by the medical community–finally received validation. Long COVID was officially acknowledged and given a medical name: post-acute sequelae of SARS-CoV-2 infection (PASC). 

In July 2021, President Biden announced that long COVID could qualify as a disability, enabling patients to file for benefits under the Americans with Disabilities Act. Also, in July, the Patient-Led Research Collaborative (PLRC) published an overview of long COVID’s 200-plus symptoms, demonstrating how the illness can impact all organs and documenting that it can occur in asymptomatic, mild, and non-hospitalized cases.

“Personally, this was a big milestone,” said long-hauler Hannah Wei, a qualitative researcher and co-leader of PLRC. “We originally published this preprint on medRxiv about a year ago and received both support and pushback from the academic world, then we were faced with several months of rejections by journals and revisions.”

Understanding Long COVID

Significant progress was also made in understanding the mechanisms behind the neurological, vascular, autoimmune, and inflammatory aspects of long COVID. 

• The cognitive dysfunction, memory loss, and difficulty concentrating vaguely labeled as ‘brain fog’ is now understood to be the result of brain damage, neuroinflammation at the cellular level, seizures, strokes, and trapped virus particles in the brain.
• A study by the World Health Organization showed that Epstein-Barr Virus, the virus behind mononucleosis, is reactivated in long-haulers, and may be causing the commonly-reported fatigue.
• Multiple studies showed that long COVID can present as a post-viral collection of  illnesses that include myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), mast cell activation syndrome, and dysautonomia. Each of these can prompt symptoms in all body organs.
• We now know that the SARS-CoV-2 virus can damage blood vessels, use them to travel to any organ, and cause microclots, pulmonary embolisms, heart inflammation, and heart attacks—even weeks after recovery from the initial infection. 
• A study by the National Institutes of Health found that the virus can linger in the brain, gut, and other organs for over seven months post-infection. This is one of the most exhaustive analyses of the virus’s ability to persist in the body and replicate in cells outside the respiratory tract.

It is hoped that these discoveries will help lead to better treatments for long COVID. Various medications and therapies are currently being tested to help bring relief to the millions of patients affected.

How Effective Are Existing Treatments and Long-Covid Clinics?

As of August 2021, 44 hospitals and health systems around the U.S. had opened clinics specifically to treat COVID-19 long-haulers, most often with rehabilitation such as physical and occupational therapy and medications. 

Medications being used at long-COVID clinics are existing drugs developed to treat other conditions: steroids such as prednisone, statins like Lipitor, and HIV-blocking CCR5 inhibitors, all of which are used to reduce or block the body’s inflammatory response in long COVID. Beta-blockers and herpesvirus antivirals are also being prescribed to long-haulers who meet certain criteria. 

One of the most challenging features of long COVID is that the illness can manifest differently in each patient and even within the same patient from month to month, minute by minute. This renders the creation of a standard treatment regimen nearly impossible, particularly in outpatient settings. 

Traditional rehabilitation exercises may need to be adjusted for varying levels of disability in long-COVID patients, most of whom are dealing with injuries and limitations across multiple body systems. Appropriate pacing is also critical. Even if the exercises are appropriate, attempting to do too much too fast can worsen symptoms, said Noah Greenspan, PT, DPT, a cardiopulmonary physical therapist and founder of the Pulmonary Wellness COVID Rehab & Recovery Clinic. “What works for some patients may not work and may even be detrimental or harmful to others.” 

Remaining Barriers to Care

Despite the availability of special clinics, many barriers still exist to accessing care and finding relief. “There is a big lack of understanding of how serious, disabling, and debilitating this illness can be,” said Alexis Misko, an occupational therapist who had to leave her job because of her persistent long-COVID symptoms. “For some, long-COVID clinics are not even accessible because people are homebound or bed-bound, and even visiting a long-COVID clinic would cause a severe relapse.” 

In addition, said Greenspan, “Many clinics simply will not accept a patient without a positive test when they had their acute infection with COVID. This is a joke because if we look at who the long-haulers are, a huge percentage of them are young people, mostly women who got sick in early 2020 when one, tests were unavailable and two, people were being told to shelter at home. Many people who probably should have been hospitalized or at least evaluated and treated were turned away.”

What to Expect in 2022

In 2022, we should see the results of numerous studies and clinical trials that were conducted in 2021, including trials involving intravenous immunoglobulin infusions (IVIG), which have been known to help in ME/CFS, autoimmune dysautonomia, and autoimmune small fiber neuropathy.

Greater collaboration is also expected between research institutions, the medical community, and patients. “The challenge ahead is not only for long-COVID and disabled patients to be invited to a seat at the table in decision-making,” Wei said. “We are grateful for these opportunities to collaborate with research institutions and public health bodies—but also for the patient voice to be treated as an equal vote.”

In December 2021, PLRC wrote an open letter to all stakeholders of the NIH RECOVER study, outlining changes the organization would like to see in the coming months, said Wei. “We advocate for patient engagement to be more transparent, accountable, and meaningful toward the people most affected by these decisions.”

*Fahmy, A. (2022, Jan. 19). What Should We Expect From Long COVID Treatment? Verywell Health. https://www.verywellhealth.com/long-covid-treatment-review-5215793

Much about the novel coronavirus, i.e., COVID-19, is still not fully understood. As research progresses and our knowledge of the virus increases, information can change rapidly. We strive to update all of our articles as quickly as possible, but there may occasionally be some lag between scientific developments and our revisions.