Millions of Americans are suffering lingering effects from COVID-19. Symptoms can include constant headaches, brain fog, severe digestion issues, among others. With few answers from the medical profession about why symptoms persist, these ‘long-haulers’ have banded together via patient advocacy groups.
Long-COVID groups have unfortunately become targets for people looking to sell products advertised as tests or treatments that can provide answers and improve symptoms but have little evidence behind them. Kiera Butler, an investigative journalist for Mother Jones, wrote about this issue in her January 2022 article, “Desperate patients shelling out thousands for a long COVID cure. Is it for real?”
The article detailed how two doctors advertised a blood test made by their company IncellDX. They said it could diagnose the severity of someone’s long-haul COVID and could connect the person with a network of doctors who would prescribe a treatment, often with a set of off-label drugs. The cost — including the test, consultation with physicians and treatments — is hundreds of dollars. And patients are unlikely to be reimbursed by insurers because they are considered experimental.
The doctors said they had an 85% success rate, but the data they used are from a few small studies that aren’t randomized. After Butler’s story ran in Mother Jones, one of the physicians deleted the Twitter account he had used to offer people with long-haul his services.
In this “How I Did It” video interview, Butler talks about why she wrote this story, how she found her sources and offers advice to other journalists investigating long COVID.