Doctors and patients are searching for answers to long COVID
While COVID may have faded from many people's minds, the pandemic isn't over. And for many people who have had COVID, neither is their illness. Dr. Vidya Sundareshan is an infectious disease physician at the post-COVID clinic at Southern Illinois University's School of Medicine. The clinic is run by 14 doctors in different specialties, along with 4 fellows and a medical student.
Sundareshan says the idea for the clinic began during the first year of the pandemic.
“[In] November 2020, people started to report that there is this entity called post COVID, where people have lingering symptoms even after they've gotten over their acute illness with COVID. And we started to think about care of these patients, wanted to understand the magnitude of the problem and the data is actually still coming out as to what the true magnitude is of people that have post-COVID symptoms and syndromes.
Now, [the] CDC just reported recently that one in five people with COVID end up having some kind of post-COVID symptoms. So we started at that time and eventually things manifested in November of 2021 when we started this post-COVID clinic and opened that out for people who were six weeks out of a 4 to 6 weeks out after having an acute episode of COVID. So, you know, we started to offer multidisciplinary care for these patients with pulmonary cardiology, physical medicine, psychiatry, infectious diseases and, you know, work these patients up. We discuss them as a group, a multi-specialty group, and come up with solutions, because the problem sometimes they have is not just limited to one system,” she said.
The clinic has seen roughly 200 patients so far. Sundareshan said people come in with many different symptoms.
“Loss of smell, loss of taste, continuing fatigue, shortness of breath, brain fog, dizziness, which is actually one of the common symptoms that we see in our post-COVID clinic, that people come and seek help for,” Sundareshan said.
She said she hopes that the research into long COVID will be useful beyond the pandemic, and will benefit people suffering from other post-viral or chronic illness. So far, Congress has allocated $1.5 billion in research money to the NIH for the purpose of studying long COVID.
“I certainly hope so. I certainly hope so because, you know, these are definitely things we don't know much about. And further research would be helpful with COVID. You know, NIH is really doing a great job with the research and then many institutions are maintaining databases. We have started to maintain a database to see how much, what the manifestations are, etc.. And yeah, having funding to continue that research is definitely helpful. But we are in fact, you know, with the post-COVID clinics that we started, we even think of what the long term ramifications of those would be or how we could continue helping people with chronic illness.
So the leadership of our department actually suggested, our department chair suggested you know even looking at this as a chronic disease clinic, so chronic fatigue, post-ICU patients that have chronic conditions with myopathy, neuropathy. So these are some of the resources we are putting together, which would definitely be helpful for patients with those kinds of conditions as well,” she said.
Sundareshan said many patients come to the clinic feeling misunderstood or like they’ve been told their illness is all in their head.
“You know, typically if you listen to patients who present with these symptoms, they have gone through a battery of tests. They have seen neurologists multiple times. They've had multiple imaging studies. And a lot of times there are really no solutions for the symptoms that they may have, the fatigue that they're feeling. Some people have been experiencing this for over a year,” she said.
She said she used to tell patients that things would get better in a year, but that isn’t always the case.
“Most of the times we tell them that with post-COVID, it's up to a year or year and a half to start feeling better, and some people still don't feel well. It is very frustrating for patients that experience this and, you know, offering support in any way possible is what we can do in these clinics,” she said.
Sundareshan says part of the challenge is that everyone is learning as they go and there’s no roadmap to help predict the future for people with long COVID.
“The good thing about this day and age is that a lot of the information gets shared readily. And we have access to good information that need not be from our area locally, but you really have access to this information and you're able to extrapolate and make some good judgment calls there and give information to our patients when we take care of them,” she said.
Sundareshan says that vaccinated people who contract COVID are still at risk for long COVID. However, the chances of developing it seem to be lower. She added that vaccines have also been used as treatment for long COVID, in some cases helping to ease symptoms.
There is currently a waiting list for the Springfield-based clinic, though Sundareshan said they are hoping to expand. The clinic also offers telehealth services for other Illinoisans who may not live near a post-COVID clinic.