9/8/25, Neurology Journal:
'Advancements in Neurology: A Conversation with Dr. Walter Koroshetz - Part 1'
'In part one of this two-part series, Dr. Stacey Clardy talks with Dr. Walter Koroshetz about recent advancements in neurology, emerging genomic therapies, the evolving understanding of long COVID, and current NINDS priorities.'
WK: "So there's a lot of interest in understanding why you get Long COVID...but I think now the shift has to be there are people who three years later are still not better. The take-home point is that those people who are not better three years later they have a condition which really fits what's called myalgic encephalomyelitis, chronic fatigue syndrome, ME/CFS."
"...everyone suspected was a post-infectious chronic condition, but no one knew what the infection was and no one could prove it. In the COVID space, it's pretty clear it was related to COVID. And so that's really the mystery. What happens to people who have an infection? And it may not be something that puts you in the hospital, but it causes this chronic fatigue, pain, trouble sleeping, trouble with memory, and this very weird thing called post-exertional malaise, which is defined as just in layman's term, you may not be feeling good one day and next day you might feel a little better and you go to the store, go out, walk a mile to the store and come back and then you're basically wiped out for 3 days. something happens during the exercise that just makes everything worse for a period of time which could be 3 days some people might be 3 weeks and that's the really peculiar signature of ME/CFS and it's also turns out to be the single symptom in Long COVID that predisposes people to a chronic condition..so we're really into that mystery of what is this post-infectious condition...we have to really get in and figure out.."
"And then of course this now with Long COVID and the RECOVER program where we've grown 15,000 people into this amazing cohort study. We have the samples, we have the patients to try and get it get to the bottom of it. I always say that this is really the last great medical mystery of all the conditions that affect people - certainly large numbers of people where there's very little to no understanding - this is it.
And so it's a real challenge to understand it. RECOVER is our best chance at getting there. But I must say after 3 years, there's lots of culprits but no one knows who's really guilty yet in terms of the cause. The cohort is being followed up. There are samples, thousands of samples. There are studies that are still going on, the patients who have the symptoms. Depending on their symptoms, the studies are customized. And we have adults, we have children, and we have pregnant women cohorts. There's autopsy studies to try and see if people who die for whatever reason who have Long COVID whether we can see something under the microscope that it's just not going to be able to get at if you just start looking at blood samples that's ongoing.
And then there are a number of large number of groups around the country have been funded to try and understand the pathophysiology of Long COVID, there are clinical trials that are ongoing. Some of them are concluding soon and there's a new set that's going to be launched actually September 9th there's a meeting here in Bethesda of people coming in to pitch ideas on trial the next trials for Long COVID that's called RECOVER-TLC, that's the next phase of trial. So yeah, the work is ongoing we've been working and people may not know this, but Dr. Francis Collins asked NINDS probably 10 years ago to really come up and take hold of ME/CFS research along with the NIAID Institute. So we've been working with them on ME/CFS for years before COVID happened, and we're really good partners with them now along with the Heart, Lung and Blood institute on RECOVER.
In science and medicine, we always look for every opportunity to turn a tragedy into something better for the future. And this is the perfect example. I when I'm talking to these patients, I often say, look, in neurology clinics, we knew about this long before COVID because we've always seen patients who whether identified or unidentified have a virus. And we've seen this with a multitude of viruses. And then what COVID brought us was a high number of individuals, unfortunately. but a high number where we knew the culprit, right? So, they could be studied in a systematic way.
There's still progress. If you talk to people who have this condition, they had a really hard time finding doctors. A lot of doctors just didn't believe the patient. I'm not sure how you cannot believe a patient, but you know, they just felt frustrated. They didn't know what it was and they just assumed it was some psychological problem the patient was having. And that's very frustrating to people who are debilitated like that. The one silver lining of the Long COVID is that as you said, we had this pandemic and now there's hundreds of thousands of people with Long COVID. Pretty hard to brush that under the rug anymore. That's for sure. So hopefully more physicians will really seriously take the pains taking care of these folks now."
