The long COVID leaves patients and researchers in a maze of questions

Millions of COVID-19 survivors around the world – even those with a mild illness – report long-term symptoms months later, including brain fog, persistent exhaustion and lung, heart or kidney damage.

Why does it matter: For too long, these long-term carriers, as they call themselves, have not been taken seriously by providers and researchers, say some Axios doctors, adding that dedicated research is urgent to treat patients with persistent symptoms.

The doctors began to realize COVID has long been a problem in the spring of last year, and yet “there is little to show for it,” says cardiologist Eric Topol, founder and director of the Scripps Research Translational Institute.

“I am very discouraged by how poor attention has been to this. We have at least 10% of people with COVID infections suffering, either for a few months or more. [now] six months later. … This is the largest category of people who are negatively affected, so many of them cannot work and function as they normally would. “

– Eric Topol

What happens: Many health care providers and systems initially dismissed the symptoms as related to something else, but growing evidence indicates that SARS-CoV-2 is to blame in many cases.

  • A study published in 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 prepress study in medRxiv, which has not yet been evaluated by colleagues, surveyed 3,762 self-described self-trainers in 56 countries, with symptoms after the onset of what was likely COVID-19. Six months after the first illness, almost half could not work full time and 22% did not work at all. 88% had cognitive dysfunction or memory loss, and most had multiple symptoms.
  • Fragments of SARS-CoV-2 have been found in several organs, and the Mayo Clinic reports that they have seen frequent complaints of long-term persistent headaches, loss of smell (anosmia) and taste (ageusia), and sleep problems.
  • Mayo found that some patients had organ damage, including injured heart muscle, causing myocarditis, palpitations and rapid heartbeat; scar tissue, leading to breathing problems; and neurological damage, causing brain fog, stroke, seizures, and Guillain-Barre syndrome.

Between the lines: There are other viruses that either cause long-lasting symptoms, such as Epstein-Barr, or remain in the system where they can reactivate and trigger further complications, such as chickenpox.

  • It is not known whether 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-term COVID needs to be discovered before therapies can be done, says Neha Dangayach, director of neuro-emergency and transfer management for 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 viral particles that triggers some of these symptoms?” Dangayach asks.

There are also many questions about why some people develop long COVID-19 and others do not.

  • “Why you and not me? [some] Do 80-year-old people receiving COVID die and some survive? Why do some 20-year-olds receiving COVID need a double lung transplant, while 90% of the others have no symptoms? We don’t know, “said Igor Koralnik, head of neuro-infectious diseases and global neurology at Northwestern Memorial Hospital, which began a COVID clinical month in May.
  • Topol says he needs to figure out if early treatments, such as monoclonal antibodies, can help decrease the chances of long-term COVID.

What’s next: Long COVID is becoming a higher priority and more longitudinal studies are expected to appear soon, says Dangayach.

  • In the United States, Congress has set aside some funding for research, and the NIH has begun studying the issue, says NIH Director Francis Collins.
  • Long-distance carriers are urged to look for specialist clinics, join care networks and consider sharing data in this patient-led survey.
  • Although not generally enough, there are a growing number of multidisciplinary clinics appearing across the country to try to address the countless issues associated with long-term COVID.
  • Koralnik says his clinic “has specialists in all these different specialties, including psychiatry and social care,” for the care of patients with long COVID.

Bottom line: “It is really our job to work together around the world and better understand this, to develop targeted treatments and to follow these patients longitudinally to also identify when these symptoms resolve and what is needed for these symptoms. symptoms to resolve, ”says Dangayach.

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