Millions of COVID-19 survivors around the world – even those with mild illness – are reporting long-term symptoms months later, including brain fog, persistent exhaustion and damage to the lungs, heart or kidneys.
Why it matters: For a long time, these long-haulers, as they call themselves, were not taken seriously enough by providers and researchers, some doctors tell Axios, adding that there is an urgent need for dedicated research to treat patients with persistent symptoms.
Doctors began to realize for a long time, COVID was a problem last spring, but “there is little to show”, says cardiologist Eric Topol, founder and director of the Scripps Research Translational Institute
“I am very discouraged by how poor the attention has been on this. We have at least 10% of people with COVID infections who are suffering, for a few months or even [now] six months later. … This is the largest category of people who are adversely affected, many of whom cannot work and cannot function as they normally do. “
– Eric Topol
What is happening: Many health care providers and systems initially dismissed symptoms as related to something else, but growing evidence points to SARS-CoV-2 as the culprit in many cases.
- A study published in The Lancet examined people with severe COVID-19 disease in China and found that, six months later, 75% still had at least one symptom.
- A prepress study in medRxiv, not yet peer-reviewed, surveyed 3,762 self-described long-haulers from 56 countries, with symptoms after the onset of what was probably COVID-19. Six months after becoming ill, almost half were unable to work full time and 22% did not work. 88% had cognitive impairment or memory loss, and the majority had several symptoms.
- Fragments of SARS-CoV-2 have been found in several organs and the Mayo Clinic reports that they have observed frequent complaints of persistent long-term headaches, loss of smell (anosmia) and taste (ageusia) and difficulty sleeping.
- Mayo found that some patients had organ damage, including injured heart muscle, causing myocarditis, palpitations and a fast heartbeat; scarred lung tissue, leading to respiratory problems; and neurological damage, causing brain fog, strokes, seizures and Guillain-Barré syndrome.
Between the lines: There are other viruses that cause long-lasting symptoms, such as Epstein-Barr, or remain in the system where they can be reactivated and trigger further complications, such as varicella zoster.
- It is not known whether SARS-CoV-2 can hide in the system, but a recent initial study of animals published in the journal Viruses indicates that this may be a possibility.
- The cause of the long COVID needs to be discovered before targeted therapies can be made, says Neha Dangayach, director of neuroemergency management and transfers at the Mount Sinai Health System.
- “Is it a reactivation of the virus? Is it an immune response or a persistent immune response to the initial viral exposure? Or is it a recirculation of the viral particles that trigger some of these symptoms?” Dangayach asks.
There are also many issues about why some people develop COVID-19 long and others don’t.
- “Why you and not me? Why [some] Do 80-year-olds who get COVID die and some survive? Why do some 20-year-olds who receive COVID need a double lung transplant, while 90% of all others have no symptoms? We don’t know, “said Igor Koralnik, head of neuro-infectious diseases and global neurology at Northwestern Memorial Hospital, which started a long COVID clinic in May.
- Topol says they need to find out if the first treatments, like monoclonal antibodies, can help decrease the chance of long COVID.
What is the next: Long COVID is becoming a higher priority, and several longitudinal studies are expected to be launched soon, says Dangayach.
- In the United States, Congress has reserved some research funding and NIH has begun to study the subject, said NIH director Francis Collins.
- Long-haulers should seek out specialized clinics, join support networks and consider data sharing in this patient-led survey.
- Although there is not enough in general, There are an increasing number of multidisciplinary clinics popping up across the country to try to solve the myriad of problems associated with COVID.
- Koralnik says his clinic “has specialists in all these different specialties, including psychiatry and social work”, to care for patients with long-standing COVID.
The end result: “The burden really falls on us to collaborate around the world and understand this better, develop targeted treatments and follow these patients longitudinally to also identify when these symptoms disappear and what is needed for these symptoms to be resolved,” says Dangayach.