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By 2025, many experts had adopted the same strategy. “I think everyone now agrees that long Covid is a natural disease,” said Igho Ofotokun, of Emory University School of Medicine, in his closing remarks at the International Long Covid Conference. “It’s not in your mind. Ofokun also explained the lack of scientific progress. “The big elephant in the room is that we don’t have a clear definition of Covid for a long time. So it makes it difficult to do everything we want to do. It makes designing clinical trials more difficult, tracking the results of clinical trials more difficult.”
One of the challenges of long-term Covid is the lack of definitive biomarkers: genes, antibodies, any unique signature of the disease. To find biomarkers, researchers must first identify patients who are suspected of having a particular disease, and then see what they have in common beyond what they have. Identifying a biomarker allows for disease-fighting strategies – gene therapy, antiviral drugs – and helps to sort people with a particular condition from those whose symptoms are caused by the condition but are caused by something else.
Scientists are in charge of the search for long-term Covid biomarkers. But their search hinges on the fundamental question of how to determine whether someone will have long-term Covid, an answer that has drawn much attention from patient advocates. Deciding who to include in a longitudinal study of Covid requires careful selection. If the methods are too strict, they will exclude people with this problem; if they are very open, they will include people who do not have this problem. Each of these poses a risk to scientific accuracy.
But for patient advocates, strict measures carry more risk. If it is implemented, some patients who are believed to have prolonged Covid will not “legally” have it. This threat was front and center when, not long after, the National Academy of Sciences, Engineering, and Medicine (NASEM) faced the challenge of creating a “uniform, broad definition” of long-term Covid. At the time, important questions remained unanswered: Does prolonged Covid require early testing for SARS-CoV-2? What signs are important? How long should it last?
In 2024, it is “a focus on the patient’s perspective and multidisciplinary dialogue,” the committee has made definition “on purpose”, to “ensure that patients with prolonged Covid are also included in the definition.” Long Covid, he thought, “is a disease caused by a disease that occurs after the infection of SARS-CoV-2 and exists for three months as a persistent, relapsing and relapsing disease, or a disease that affects one or more organs.” Some of the possible symptoms: shortness of breath, cough, persistent fatigue, back pain, depression, memory changes, headache, headache, rapid heart rate, sleep disturbance, taste or smell problems, bloating, constipation, and diarrhea.
According to the NASEM definition, one symbol from this list is sufficient. It can be soft or hard. Previous infections “can be diagnosed or undiagnosed” – that is, an initial Covid test is not necessary. Put it differently: If you start having trouble sleeping, on and off, for three months, and you say it’s an unconfirmed case of SARS-CoV-2, you have long-term Covid.