Refining our understanding of disease outcomes: lessons learned from the “long-haulers”

We are familiar with the stats: 80% of those infected with SARS-CoV-2 will have mild or asymptomatic disease, while 20% will need to be admitted to the hospital for oxygen support, and 5% of those will be admitted to intensive care units for breathing support (sometimes mechanical ventilation).

Most studies to date have appropriately focused on the mortality of COVID-19 (what percentage of those infected die of the disease), but scant few have focused on the longer term outcomes (morbidity) of those who have mild or moderate disease.  Because this virus can cause dysregulation of the immune system, sometimes inflammation so severe it is termed a “cytokine storm,” it can affect the functioning of organs all over the body and in the small blood vessels leading to them which can clot and cause damage to the kidney, heart, and nervous system.

While we might expect survivors of severe disease to bear the worst of the long-lasting consequences, it seems COVID-19 can cause persistent symptoms even in those with milder illness.  First person accounts are all over Slack and Facebook, many still suffering months after infection.  They call themselves “long-haulers.”

One well known and credible long-hauler is Paul Garner, an infectious disease professor at the Liverpool School of Tropical Medicine in the UK, infected in late March.  In a blog post published by the British Medical Journal he describes having:

“. . . muggy head, upset stomach, tinnitus (ringing in the ears), pins and needles, breathlessness, dizziness and arthritis in the hands.”  These symptoms have waxed and waned but not yet resolved.  He says this is: “. . . deeply frustrating.  A lot of people start doubting themselves . . . Their partners wonder if there is something psychologically wrong with them.”

To date only one peer-reviewed study has looked at the long term symptoms of COVID-19 infection: a single group of 143 survivors from Rome.  Most did not require hospitalization and all were assessed 60 days after infection.  44% of them reported a worsened quality of life, including persistent fatigue (53%), breathlessness (43%), joint pain (27%), and chest pain (22%).

A more recent paper (which has not yet been peer reviewed) was uploaded to medRxiv in August.  Researchers from the Academic Respiratory Unit of the North Bristol NHS Trust in the UK followed 110 COVID-19 patients whose illnesses required hospitalization for a median of five days between March 30 and June 3.  Twelve weeks after patients were well enough to leave the hospital 74% of them reported persistent symptoms including fatigue and breathlessness, despite the overwhelming majority of them having normal basic blood test results, chest X-rays, and lung function studies.

Our early conception of one “catching COVID” and being sick for a couple weeks, then clearing the virus and being totally fine afterwards may not be true for everyone.  While it can seem like this pandemic has been around “forever” at this point, scientific understanding of the breadth and depth of its long term outcomes is still in the early days and we clearly have much more to learn about the disease and its aftermath.

Survivors with persistent symptoms, the “long-haulers,” are clearly not uncommon and we have many lessons to learn.  Perhaps the most fundamental one?

Do your best not to get infected with COVID-19 in the first place.

Above all: WEAR A MASK IN PUBLIC AREAS!  

Stay home if you are sick, wash your hands, reserve testing to those who might be infected when testing capacity is limited, and be honest with those in your household and social bubble (Quaranteam) about potential exposures.

(Sky Pittson, MD, Updated Sept 16, 2020)