FRachel Robles had to fight for her diagnosis of Long COVID. The virus struck Rachel Robles in March 2020. At the time, little was known about its long-term effects. Also, testing for it was not possible.
To this day, she is sensitive to looking at screens—doing so can prompt pressure in her head and ringing in her ears—and has to manage COVID-19-related injuries to her liver and brain. But since she never got tested for COVID-19 when she first got sick, Robles had to “fight tooth and nail for every diagnosis I’ve received,” convincing doubtful doctors that she’d caught the virus and developed Long COVID.
While she eventually was diagnosed with Long COVID-19, the process would have been simpler if Robles had the evidence of infection that she could provide. Robles recommends anyone suspecting they may have COVID-19 to get a lab test. This is in case the patient develops Long COVID or needs documentation.
“I never got proof of my initial COVID infection, and I was gaslit so much,” says Robles, who is an administrator at the Long COVID support group Body Politic and a contributor to the Patient-Led Research Collaborative for Long COVID. “So I always tell people, ‘This is something you need to do if you have a COVID infection, just in case.’”
David Putrino, a Long COVID researcher at New York’s Mount Sinai health system who co-authored a chapter of the forthcoming Long COVID Survival guide with Robles and neurologist Dr. Dona Kim Murphey, says he “wholeheartedly” agrees that people should get as much documentation of an infection as possible. Getting a PCR test is “100% the recommendation”—but if all you can do is take an at-home test, at least keep photos of the results, Putrino says.
“Covering your bases as soon as you start to feel unwell and keeping good records is super important,” he says. Putrino Murphey and Robles recommend in the book that patients get blood and chest Xrays as soon as they are diagnosed with COVID-19. This will give them a baseline record to refer back to in the event of complications.
Although PCR tests remain the best method of confirming accuracy, some doctors still recommend that you get one. Rapid tests have become more popular and are accepted by many people. A PCR test isn’t even required to get a prescription for the antiviral Paxlovid.
It may seem paranoid to plan ahead for a possible case of Long COVID—but the odds of getting it aren’t so long. According to federal statistics, one-in-five people with COVID-19 will experience symptoms such as fatigue, cognitive dysfunction and chronic pain.
Long COVID is a condition that can be caused by a history of COVID-19. This documentation could help you get diagnosed quickly and properly treated at a Long COVID clinic. Not all patients will have this proof.
In July, Hannah Davis—who is also part of Body Politic and the Patient-Led Research Collaborative for Long COVID—said in Congressional testimony that PCR and antibody tests “are often required for sick leave, entry into Long COVID clinics, health care, and participation in research,” even though some people get false negative results and others can’t get tested at all. Davis stated that COVID-19 can cause antibodies to disappear or make it difficult for people to detect.
Dr. Hector Bonilla, who co-directs Stanford’s Post COVID-19 Syndrome Clinic, says his facility accepts a patient as long as they have a positive test result linked to their name—that is, one done by a clinician or testing service, as opposed to a do-it-yourself home test—or evidence of infection-related antibodies. Having a COVID-19 test result can help determine whether someone has Long COVID or other, similar illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Bonilla says. (Some patients with Long COVID also fulfill the criteria to diagnose ME/CFS.
But Dr. Benjamin Abramoff, who directs Penn Medicine’s Post-COVID Assessment and Recovery Clinic, says he thinks fewer clinics will require official test results now that at-home tests are the norm. “Realistically, everybody’s going to be getting home tests,” he says. “I can’t imagine anyone requiring [formal testing] moving forward.”
And while many Long COVID patients without PCR test results were outright dismissed by doctors early in the pandemic, Abramoff thinks that’s happening less now that Long COVID is more widely known. “It still happens, but much less than it did,” he says. He said that documentation from a doctor, even without a PCR testing result, can suffice to receive disability benefits and insurance coverage. Even with all the documentation required, it is difficult for long-haulers to receive disability benefits.
Maria Van Kerkhove, the World Health Organization’s (WHO) technical lead for COVID-19, said in a statement to TIME that “the lack of proof of prior infection shouldn’t be an impediment for people to get access to diagnosis and care” for Long COVID. The WHO’s definition of Long COVID specifies that it can occur among people who have either a “probable or confirmed SARS-CoV-2 infection,” she noted.
Still, 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 institution and could change in the future. “Those diagnostic criteria can change based on who’s in power,” he says. “Making sure that you have very clear documentation of a positive test is important, because it gives you your best chance of being able to receive services as long as you need them.”
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