MMore than three years into the Covid pandemic, there are important unanswered questions about long Covid, which significantly limit healthcare providers’ ability to treat patients with the condition, according to US physicians and scientists.
That vacuum of information remains, providers say, because the US has moved far beyond the pandemic, while those with prolonged Covid face stigma and questions about whether their symptoms are genuine.
But while there has been only a trickle of new information about Long Covid, doctors say they are confident that researchers will find answers to basic questions about the disease, such as: In addition to being exposed to the virus, what exactly What is the cause of long covid?
“We don’t have our finger on what’s wrong, what’s causing it biologically, and that’s a big problem,” said Dr. Mark Sala, co-director of Northwestern Medicine’s Comprehensive COVID-19 Center. “It’s hard to prescribe drugs or treatments without a biological basis for why someone is feeling so tired from exercise.”
In addition to the ambiguity surrounding the underlying causes of long Covid, there are challenges in research as to how Covid can cause so many different symptoms. The Centers for Disease Control and Prevention list includes fatigue, respiratory problems and difficulty thinking or concentrating, but adds that “post-Covid conditions may not affect everyone equally”.
“Everyone has a different constellation of symptoms,” says Dr. Steven Deeks said. “Some people get better over time, some people get better, some people get worse,” and so it’s difficult for researchers to determine when a study should end and a drug versus a placebo. should be compared.
This ambiguity creates something of a Catch-22 for efforts to advance research. Pharmaceutical companies want to have a biomarker – meaning a defining characteristic used to measure a condition – long before investing in research to find a drug to treat Covid, and since there is none, They won’t do the expensive studies that could help identify biomarkers.
“We are struggling in academia to come up with a definition [of the condition] It will work, and we’re looking forward to involving the people who regulate clinical trials and hope to involve industry once we make some progress,” Deeks said. Said, who is also considered an expert on HIV.
Bioethicist Dr. Ezekiel Emmanuel of the University of Pennsylvania said the medical field lacked a clear understanding of COVID for a long time partly because the National Institutes of Health (NIH) initially focused on the symptoms rather than addressing the underlying problem Was.
Emanuel said, “It was absolutely the wrong approach”. “It’s a big, big problem, and we were initially going to try Band-Aids.”
The researchers said it may take years to answer questions about the fundamental problems with Covid in the long run.
Sala said the virus has been around for about three years, which compared to other diseases is a very short time to understand the condition and develop treatments.
But for people with the condition, it doesn’t matter that three years isn’t that long in terms of scientific research. Hannah Davis, a co-founder of the Patient-Led Research Collaborative, a group of researchers who have also had long-standing Covid, contracted the virus in March 2020 and remains disabled as she has neurological problems along with other symptoms and chronic fatigue. He previously worked in Machine Learning and Artificial Intelligence.
They argue that there has not been a significant push about conducting trials for drugs that can treat the condition. According to Stat, the co-chair of a $1.2bn NIH initiative to study long Covid cases acknowledged frustration with the pace of research and said it “took too long” to start enrolling patients.
“Those clinical trials really need to start immediately because we won’t see results from them for years and people are reaching the three-year mark and are suffering,” Davis said.
Meanwhile, Sala continues to see roughly the same number of patients in the northwest center than earlier in the pandemic, though these are now more often people who are suffering from symptoms such as brain fog or unusual fatigue rather than exercising. Compared to people who had been on a ventilator for months in the intensive care unit.
Sala said that long Covid patients are often most distressed about the cognitive effects of the condition.
“In his social circles, he noticed that he was having difficulty just finding words and remembering things. It’s very frustrating for them to see other people,” Sala said.
The physical symptoms of long Covid also keep disrupting people’s lives.
In Sala’s city, Chicago, Blackhawks star and captain Jonathan Toews recently announced that he is withdrawing from the NHL team as he suffers from prolonged COVID and Chronic Immune Response Syndrome.
“It’s the kind of person I think that surprises people the most,” Sala said. “Somebody who was athletic, ran a marathon, and then all of a sudden couldn’t get back on their feet or do what they wanted to do athletically before. That’s the person who really has that stigma attached to it.” Is.
Sala said the lack of biomarkers not only hinders research but can also have harmful effects on patients’ mental health. The only way to determine if someone has had Covid for a long time is to ask people how they are feeling.
With something like iron deficiency anemia, “it’s very clear in your labs and you can have a good explanation for your friends. Here, all your tests come back normal, and you start thinking: ‘What It’s all in my head,’ Sala said.
While patients and providers are frustrated by the pace of research, those studying the virus say they are making progress. For example, researchers reported in June that they detected a fragment of the virus in the blood of people with chronic Covid up to a year after the original infection. Deeks said this finding could serve as a biomarker for the condition.
Emanuel said that once researchers learn how the virus may affect a person’s immune system, it could also answer questions about other chronic and acute diseases.
“I think a breakthrough here is going to be profound for our understanding of human immunology,” Emanuel said. “I think we will get a very clear understanding of what can go wrong with the immune system.”