Millions of COVID-19 survivors worldwide – even those with mild disease – report long-lasting symptoms months later, including brain fog, persistent exhaustion, and lung, heart, or kidney damage.
Why it matters: For too long, these long-distance travelers, as they call themselves, have not been taken seriously enough by suppliers 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 COVID was a problem last spring, and yet “there is little to prove,” says cardiologist Eric Topol, founder and director of Scripps Research Translational Institute
“I am very discouraged about how little attention has been paid to this. We have at least 10% of people with COVID infections suffering for a few months or still. [now] six months later. … This is the largest category of people who are adversely affected, many of whom are unable to work and function as they normally have. “
– Eric Topol
What is going on: Many health care providers and health systems initially dismissed the symptoms as something else, but growing evidence suggests that SARS-CoV-2 is the culprit in many cases.
- A study published in The Lancet looked at people with severe COVID-19 disease in China and found that six months later, 75% continued to experience at least one symptom.
- A pre-pressure study in medRxiv, not yet peer-reviewed, examined 3,762 self-described long-haul vehicles from 56 countries, with symptoms after the onset of what was likely COVID-19. Six months after they first became ill, nearly half were unable to work full time and 22% were not working at all. 88% had cognitive impairment or amnesia, and most had multiple symptoms.
- Fragments of SARS-CoV-2 have been found in multiple organs and the Mayo Clinic reports that they have regularly seen complaints of long-lasting headaches, loss of smell (anosmia) and taste (ageusia), and difficulty sleeping.
- Mayo found that some patients had organ damage, including damaged heart muscle, which caused myocarditis, palpitations and fast heartbeats; scarred lung tissue, leading to difficulty breathing; and neurological damage, causing brain fog, strokes, seizures and Guillain-Barre syndrome.
Between the lines: There are other viruses that cause long-lasting symptoms, such as Epstein-Barr, or remain in the system where it can reactivate and cause subsequent complications, such as varicella-zoster.
- It’s not known if SARS-CoV-2 can hide in the system, but a recent, early study of animals in the journal Virusess indicates that this could be a possibility.
- The cause of long COVID must be discovered before targeted therapies can be created, said Neha Dangayach, director of neuro-messaging management and transfers for the Mount Sinai Health System.
- “Is it a reactivation of the virus? Is it an immunological response or a sustained immunological response to the initial viral exposure? Or is it recirculation of the viral particles that cause some of these symptoms?” Dangayach asks.
There are also many questions about why some people develop a long COVID-19 and others don’t.
- Why you, and not me? Why [some] 80-year-old people who get COVID die, and some survive? Why do some 20-year-old people who get COVID need a double lung transplant, when 90% of all others have no symptoms? We don’t know, ”said Igor Koralnik, chief of neuro-infectious diseases and global neurology at Northwestern Memorial Hospital, who started a lengthy COVID clinic in May.
- Topol says they need to find out if early treatments like monoclonal antibodies can help reduce the chances of long-term COVID.
What’s next: Long-term COVID is given higher priority, and several longitudinal studies are expected to emerge soon, Dangayach says.
- In the US, Congress has set aside some money for research and the NIH has begun to study the matter, said NIH director Francis Collins.
- Long-distance travelers are urged to seek out specialist clinics, join support networks, and consider sharing data in this patient-led study.
- While there are generally not enough, More and more multidisciplinary clinics are popping up across the country to try to address the myriad of issues associated with long-term COVID.
- Koralnik says his clinic “has specialists in all these different specialties, including psychiatry and social work” to care for long-term COVID patients.
It comes down to: “It is really up to us to work together around the world and better understand this, develop targeted treatments and follow these patients longitudinally to also determine when these symptoms disappear and what it takes to make these symptoms disappear. Dangayach says.