For Rachel Robles, diagnosed with long-term COVID is a tough battle. She contracted the virus in March 2020, when most people were unaware of its long-term effects and testing was inaccessible to most people.
To this day, she is very sensitive to looking at screens – doing so can cause pressure in her head and ringing in her ears – and must manage COVID-19 related injuries to her liver. and her brain. But since she was never tested for COVID-19 when she first got sick, Robles had to “fight teeth and nails for every diagnosis I received”, convincing doctors to suspect she had contracted the virus. virus and develop Long COVID.
She was eventually diagnosed with Long COVID, but perhaps it would have been easier if she had the evidence of infection that the test results provide, she said. Robles now recommends that anyone who suspects they have COVID-19 get a lab test, in case they go on to develop long-term COVID and need documentation of a previous infection for a diagnosis. or care.
“I never had proof of my initial COVID infection and I was pleasantly surprised,” said Robles, administrator of the long-term support group COVID Body Politic and contributor to Collaborative patient-led research for long COVID. “So I always tell people, ‘Here’s what you need to do if you have COVID, just in case.'”
David Putrino, a longtime COVID researcher at New York’s Mount Sinai health system, co-author of an upcoming chapter Long COVID Survival Guide with Robles and neurologist Dona Kim Murphey, said he “wholeheartedly” agreed that people should get as much documentation about the infection as possible. Doing a PCR test is “100% recommended”—but if all you can do is take the test at homeAt least keep pictures of the results, says Putrino.
“Covering your base as soon as you start to feel unwell and keeping good records is extremely important,” he said. (In the book chapter, Putrino, Murphey, and Robles even recommend that people get blood tests and chest X-rays done soon after they’re diagnosed with COVID-19, so they have a baseline record just in case. complications later.)
PCR tests are still considered the gold standard for accuracy, so some doctors recommend getting one to confirm the results with a home swab. But people are increasingly skipping this step as rapid tests become widely available and increasingly accepted. PCR test not even required to get an antiviral prescription Paxlovid.
It may seem paranoid to plan ahead for a possible long-term COVID — but the odds of it aren’t that long. Recent Federal Data suggests that one in five people with COVID-19 will develop symptoms of long-term COVID, which can include fatigue, cognitive dysfunction, and chronic pain, among many others.
If someone develops long-term COVID, having prior COVID-19 case documentation can make it easier to make an accurate diagnosis, or treatment at a long COVID clinic, some require proof of previous infection or a positive antibody test. But not every patient has such evidence.
In July, Hannah Davis – who is also part of Body Politic and the Patient-Leaded Research Collaboration for Long COVID – said in the testimony of Congress that PCR and antibody tests are “commonly ordered during sick leave, long COVID clinic visits, healthcare, and research participation,” although some people receive false negatives and others can’t get tested. Davis added that some people infected with COVID-19 do not make antibodies, or find their antibody levels drop to undetectable levels over time.
Dr. Hector Bonilla, who co-directs Stanford’s Post COVID-19 Syndrome Clinic, said his facility accepts patients as long as they have a positive test result associated with their name — that is, a result. test results performed by a clinician or testing service, as opposed to self-testing at home — or evidence of infection-related antibodies. Having a COVID-19 test result can help determine if someone has Long COVID or other similar illnesses, such as myalgic myelitis / chronic fatigue syndrome (ME/CFS), Bonilla said. (Some Long COVID patients also meet the ME/CFS diagnostic criteria.)
But Dr. Benjamin Abramoff, who directs Penn Medicine’s COVID Assessment and Rehabilitation Clinic, said he thinks fewer clinics will now ask for official test results, but test at home. is the standard. “Really, everyone will get the test at home,” he said. “I can’t imagine anyone asking [formal testing] move forward.”
And while many Long COVID patients without PCR test results were completely dismissed by doctors early in the pandemic, Abramoff thinks that happened less often as Long COVID became more widely known. “It still happens, but much less than it did,” he said. Even without PCR test results, he said, documentation from a doctor could still be enough to get disability benefits, insurance and working conditions. Many long-term lovers struggle to get disability benefits even with proper documentation, however.
Maria Van Kerkhove, the World Health Organization’s (WHO) technical lead on COVID-19, said in a statement to TIME that “the lack of evidence of prior infection is not an obstacle for everyone.” access to diagnosis and care” for long-term COVID. The WHO definition of long COVID clearly states that it can occur in people with “probable or confirmed infection with SARS-CoV-2,” she noted.
However, Putrino says it’s better to be safe than sorry, as the criteria for getting a long COVID diagnosis or being admitted to a treatment center vary by facility and could change in the future. . “Those diagnostic criteria can vary based on who is in power,” he said. “Making sure you have very clear documentation of your positive test result is very important, as it gives you the best chance of being able to get the services for as long as you need them.”
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