Millions of COVID-19 survivors worldwide – even those with mild illnesses – report long-term symptoms months later, including brain fog, persistent exhaustion, and lung, heart, or kidney damage.
Why it matters: For long periods of time, providers and researchers, as they call themselves, do not take these long-term careers seriously enough, some doctors tell Axios, adding that there is an urgent need for dedicated research to treat patients with persistent symptoms.
Doctors began to realize long COVID was a problem last spring, and yet there is “little to show for it”, says cardiologist Eric Topol, founder and director of Scripps Research Translational Institute
“I’m very discouraged about how poor the attention was to this. We have at least 10% of the people with COVID infections who are 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 unable to function as usual. ‘
– Eric Topol
What is happening: Many providers and healthcare systems initially blamed the symptoms as something else, but increasing evidence suggests that SARS-CoV-2 is the culprit in many cases.
- A study published in The Lancet looked at people who had severe COVID-19 disease in China and found that 75% six months later still experienced at least one symptom.
- A Preliminary Study in medRxiv, not yet peer-reviewed, interviewed 3,762 self-described long rangers from 56 countries, with symptoms after the onset of likely COVID-19. Six months after they first became ill, 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 multiple organs and according to the Mayo Clinic there are frequent complaints of prolonged persistent headaches, loss of smell (anosmia) and taste (ageusia) and problems with sleep.
- Mayo found that some patients had organ damage, including injured heart muscle, causing myocarditis, palpitations, and rapid heartbeat; scar tissue with scars, leading to respiratory problems and neurological damage, causing brain fog, strokes, seizures and Guillain-Barre syndrome.
Between the lines: There are other viruses that cause prolonged symptoms, such as Epstein-Barr, or stay in the system where it can reactivate and later cause complications, such as varicella-zoster.
- It is unknown whether SARS-CoV-2 may be hiding in the system, but a recent early study of animals in the journal Viruss indicates that this may be a possibility.
- The cause of long COVID needs to be discovered before effective therapies can be done, says Neha Dangayach, director of neuro-emergency management and transfers for the Mount Sinai health system.
- “Is it a reactivation of the virus? Is it an immunological response or a persistent immunological response to the initial viral exposure? Or is it a recirculation of the viral particles that causes some of these symptoms?” Ask Dangayach.
There are also many questions about why some people develop COVID-19 for a long time and others do not.
- “Why you and not me? Why? [some] 80-year-olds who get COVID die, and some survive? Why do some 20 year olds who get COVID need a double lung transplant while 90% of all the others have no symptoms? We do not know, “said Igor Koralnik, head of neuro-infectious diseases and global neurology at Northwestern Memorial Hospital, which opened a long COVID clinic in May.
- Topol says they need to find out if early treatments such as monoclonal antibodies can reduce the chance of long-term COVID.
What’s next: Long COVID is becoming a higher priority, and several longitudinal studies are expected to come out soon, Dangayach says.
- In the US, Congress has funded research and the NIH has begun studying the issue, says NIH Director Francis Collins.
- Long-distance caregivers are urged to seek out specialized clinics, join support networks, and consider data in this patient-led survey.
- Although there are generally not enough, there are a growing number of multidisciplinary clinics popping up nationwide to address the myriad problems associated with long COVID.
- Koralnik says his clinic ‘has specialists in all the different specialties, including psychiatry and social work’, to care for long-term COVID patients.
The conclusion: “We really rely on collaboration around the world and better understanding it, developing targeted treatments, and following these patients at length to also identify when these symptoms resolve, and what it takes to resolve these symptoms,” says Dangayach.