Long COVID: ‘People are suffering and they are losing hope’

For some, the battle with COVID-19 ends after several weeks of illness. But for millions of COVID survivors, their symptoms have lasted for months up to more than a year after their infection.

These lingering symptoms, known as long-COVID or Post-Acute SARS-CoV-2 Infection (PASC), vary from person-to-person.

Estimates predict that 20%-80% of COVID survivors will develop PASC. With 36.2 million currently infected in the United States alone, this equates to millions  potentially at risk for lingering symptoms.

As COVID cases rise, so will long-COVID cases, says a UCI Sue & Bill Gross School of Nursing professor.

Patient stories key to understanding

“We know that COVID was in the US, especially on the west coast, as early as November or December of 2019,” says Associate Professor Melissa D. Pinto, PhD, RN, FSAHM, FAAN, a nurse scientist and national expert on PASC.

“This means that some long haulers have had unresolved symptoms now for as long as 18 months. This is a long time for survivors to be managing these often severe and disabling symptoms.”

Pinto leads the COVID-19 Research Collaborative (C-19RC), a nurse-led multidisciplinary team of five academic institutions across the United States. In early 2020, the team partnered with Survivor Corps, a grassroots organization of COVID-19 survivors.

The organization has been collecting patient data on COVID symptoms and experiences via a survey that was taken by more than 5,100 people with PASC.

“Our lab has been working to understand the wide range of PASC impacts for more than a year,” Dr. Pinto says. “We are learning a lot from patient stories, including what is helping them.”

There is an urgent need to understand PASC, she says. And survivors need their symptoms treated so they can return to their pre-illness activity levels.

“People are suffering, and they are losing hope.”

Repairing the relationship with healthcare system

One of the major problems, according to Pinto and Associate Professor Candace Burton, PhD, RN, ANF-BC, AGN-BC, FNAP, is that some long haulers aren’t believed when they have reported PASC symptoms.

This is prolonging suffering, creating mistrust and causing trauma, they say. [Read Patient invalidation breeds mistrust, causes trauma]

Dr. Pinto suggests that medical providers recognize dismissal of long COVID as part of the patients’ experiences of this new illness. She believes not doing so will risk further invalidation and worse outcomes for patients.

“We can’t act like this didn’t happen and hope PASC patients will return to the healthcare system without reservation,” she says.

“I think we must work collectively to repair the relationship between patients and providers so everyone who needs care will be able to access it.”

Other sufferers of long COVID are unable to work or leave their homes.

The crisis cannot wait and something must be done now to help patients, Dr. Pinto says.

“There are people who are bed-bound who are so sick. There is no safety net for patients with PASC or accommodations despite this disability. We need to work at multiple levels to develop structures in our communities and pass legislation to better support patients, with the ultimate goal of recovery ” Dr. Pinto says.

“Additionally, we have to think about what we can do right now, today, that will help patients feel better and get relief from symptoms.”

‘This disease must be treated using a holistic approach’

Drs. Pinto and Burton point out that long COVID can affect every organ system, including the neurological and vascular systems.

There is no cure for PASC, only treatment for its symptoms, which can include headaches, bruising, fatigue, brain fog, and loss of smell, among others. To date, more than 200 PASC symptoms have been reported by patients. Dr. Pinto says, it appears there is a pattern of symptoms often clustering together.

The investigation, treatment and management of symptoms are the very foundations of nursing practice, she argues.

“As nurses, we have a strong track record of leading research in the areas of symptom science and self-management. Nursing is thereby well-poised to address the needs of PASC [long COVID] survivors,” Drs. Pinto and Burton state in an editorial appearing in Research in Nursing and Health.

“This is a disease that affects every aspect of a person’s existence and must be approached holistically,” Dr. Burton says.

“And nurses excel at investigating the symptoms patients report. This is how we treat, how we research. We don’t just look at one thing,” noting that nurses created the original symptom management model at UC San Francisco 20 years ago.

Alleviating patient suffering now

“Nurses already have an evidence base of interventions that could potentially help alleviate patient suffering right now,” Dr. Pinto says.

“These interventions address a number of chronic diseases and are across the lifespan. Just like drugs can be repurposed for an expeditious solution to address diseases, so can our interventions.”

On the research front, nurses are already advancing the science of symptoms using the tools of advanced precision health to identify, characterize, and manipulate the biologic, genetic, and behavioral mechanisms that underlie symptoms of other chronic diseases.

PASC is a natural extension of this ongoing work. 

Drs. Pinto and Burton, with their coauthors, assert that the immediate involvement of nurse scientists in national PASC efforts is needed to quickly resolve symptoms and promote healing for patients.

“Nurses have been the most trusted profession for almost two decades,” Dr. Pinto notes. “Patients trust us. We can help restore trust among patients who have disengaged and use our science to potentially help patients recover faster.”

The editorial is set to appear in the October issue of Research In Nursing and Health and is also co-authored by:

• Charles A. Downs, PhD, ACNP-BC, FAAN, University of Miami, School of Nursing and Health Studies
• Natalie Lambert, PhD, Indiana University, School of Medicine