After a year of treating more than 700 patients struggling with the pain, fatigue and brain fog that are the main symptoms of “long COVID,” the region’s biggest clinic focusing on this disease has made it clear that it’s largely in our heads.
No, I don’t mean it like that – this disease is definitely not imaginary.
I mean it literally: Long COVID is physically inside our heads, or at least our nervous system.
Consider shortness of breath after mild exertion, a very common symptom among people struggling with long COVID (or post COVID or post-acute COVID – terminology is still in flux).
“The tests don’t show anything. … You can assess lung function with O2 in blood, chest x-ray, CAT scan, angiogram, pulmonary function tests. These things are always normal. People feel shortness of breath but their oxygen level is normal,” said Dr. Jeffrey Parsonnet, the Post-Acute COVID Syndrome Clinic leader at Dartmouth Hitchcock Medical Center, which started taking referrals one year ago. “The brain is saying: ‘I’m not getting enough oxygen,’ but it’s not a lung problem.”
“The same is true of chest pain, palpitations,” said Parsonnet. “These show the heart is fine. It’s the brain that is telling the heart to do funny things like beat too fast.”
In other words, while COVID-19 kills or hospitalizes us by doing bad things to our lungs, long COVID harms us by doing weird things to our nervous system.
“People with COVID die of respiratory problems. We anticipated that would be a major issue but it’s something we hardly ever have to deal with,” said Parsonnet. “It’s really a neurologic disease.”
In many people, he said, it’s a severe disease, one that causes so much pain, anxiety, depression and inability to concentrate that it affects all aspects of life.
“People who think this is a mild problem don’t see the people … who are out of work, out of money, losing friends and family,” he said. “It’s very serious.”
For those who, like Parsonnet, are worried about the effects of long COVID on society this is not good news. Neurologic diseases are often hard to pin down.
There’s no diagnostic test to tell if somebody who is suffering from long-term fatigue and pain is affected by long COVID. (I thought maybe clinicians could spot SARS-CoV2 viruses rampaging through our neurons, but no such luck.)
The rise of at-home testing complicates things further because an increasing number of people referred to the clinic have no evidence of coming down with COVID-19 in the first place. There is a test to find nucleocapsid antibodies, created when we get COVID-19 but not when we get the vaccine, but Parsonnet noted that those fade after six months or so.
And to a certain extent, he said, diagnosis is not important because just as we don’t know the cause of long COVID, we don’t know its cure.
“It’s almost a moot point because there’s no specific treatment. if you’re dealing with a virus infection – let’s say, herpes – we have anti-herpes drugs, so it’s important to know that somebody had herpes before you give the herpes drug. But there is no anti-long-COVID drug, because we don’t even know what causes long COVID,” he said. “If we see a patient with fatigue, body aches, rapid heart rate, it often doesn’t really matter if it’s long COVID or not. We’re still addressing what the problem is and how you can go about fixing it.”
Parsonnet said there have been some cases in which patients with long COVID came down with a breakthrough case of COVID-19 despite being vaccinated and, after receiving Paxlovid, an anti-viral treatment given when there is concern about severe COVID-19, their long COVID symptoms went away.
This hints that sometimes long COVID may be caused by lingering COVID-19 itself. But that’s far from certain and since Paxlovid has side effects, notably interaction with other medications, it’s too early to start giving it automatically, Parsonnet said.
That won’t prevent people from asking for it, of course, as word spreads among the self-appointed medical experts who thrive online. In fact, unless a definitive diagnosis shows up quickly, I can see long COVID becoming a new version of “chronic Lyme.”
That set of long-term symptoms also follows a serious and increasingly common disease, and also lacks a diagnostic test. Chronic Lyme has become a flash point between the medical establishment trying to understand the causes and treatment of the syndrome, and a group that has decided it knows the answer and demands a constant application of antibiotics, perhaps for years.
COVID-19 has gotten so pointlessly politicized that it’s hard to believe long COVID won’t get sucked into somebody’s conspiracy theory and political hacks will start demanding over-the-counter Paxlovid, assuming they don’t go straight to advocating bleach cocktails or some other foolishness.
So we should be glad that there are places like this clinic actually looking at the problem and trying to help people. Because it’s becoming increasingly likely that the effects of COVID-19 are going to be with us for a long time.
