I remember a scene in the 1979 movie The Jerk, starring Steve Martin as Navin. He was telling Marie (played by Bernadette Peters) about pizza in a cup. They were both eating pizza in a cup. At the time, this was funny because it was ludicrous to think of pizza being served in a cup. It was almost unthinkable. Now you can find recipes for pizza in a cup all over the web. Things have changed.
But what does that have to do with COVID-19 Long Haul Syndrome? As a retired consultation-liaison psychiatrist, I can tell you that it’s beginning to look like things have not changed when it comes to doctors thinking somebody has a psychiatric syndrome if he presents with symptoms that can’t be medically explained. In other words, it’s easier to invent pizza in a cup then to rethink the mind-body dualism puzzle.
That seems to be happening with COVID-19 Long Haulers. I’m beginning to see the telltale signs of somatoform-type labels eventually getting applied to patients who get mild symptoms that sound like COVID-19 early on, but which often don’t get severe enough to require hospitalization. They tend to be younger, and develop long-term symptoms, some lasting for over a year, that sound a lot like what many doctors used to page me about—medically unexplained symptoms (MUS). They have fatigue, often have breathlessness, and pain for which medical tests often turn up negative results. When doctors substitute other words for MUS that they believe are less stigmatizing, there is a predictable backlash by patients who reject the new, softer label. Pizza in a pan.
Further, I noticed a study sponsored by Beth Israel Deaconess Medical Center listed on Clinical Trial dot gov called Mind Body Intervention for COVID-19 Long Haul Syndrome (first posted April 22, 2021). Participants will be assessed using the Somatic Symptom Scale-8 (SSS-8) which measures somatic symptom burden and was developed in the context of evaluating the DSM-5 somatic symptom disorder diagnosis. Pizza in a pan again.
I also found a comprehensive article on line, “The Medical System Should Have Been Prepared for Long COVID” by Alan Levinovitz, which presented a thorough description of the problem many patients have with physicians telling them their symptoms are “all in their heads.” Unfortunately, this now includes the symptoms of COVID-19 Long Haul Syndrome. In all fairness, I think most physicians try not to give patients that impression. For many years, I was often consulted to assist primary care and specialist physicians in “convincing” patients to think “both/and” about symptoms which could not be medically explained. In fact, that was part of my approach because, believe it or not, some patients were stuck in an “either/or” mindset about symptoms: physical vs psychological, body vs mind, eventually reaching invalidating conclusions like real vs not real. It’s not helpful, partly because physicians tend to get stuck in that mindset as well. We can’t seem to get the pizza out of the pan and into a cup.
Levinovitz mentions that some patients with COVID-19 Long Haul Syndrome have symptoms similar to another syndrome which had been linked to somatoform illness, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). There is a great deal of information about it on the CDC website although the cause is still unknown. The CDC language treads very carefully on the issues of causation and treatment—and manage to draw a sort of dotted-line link between ME/CFS and COVID-19. It’s the same old pan.
Levinovitz also mentions Postural Orthostatic Tachycardia Syndrome (POTS), another poorly understood syndrome. I remember presenting a Grand Rounds about a patient with this POTS to my colleagues in the Psychiatry Department when I was an Assistant Professor. I invited the cardiologist who consulted me about the issue in one of his patients—who he suspected of having anxiety as the primary issue. Years later, I was consulted by another doctor about a different patient who definitely had abnormal test results (Tilt Table) consistent with POTS, did not suffer from anxiety, yet still thought psychiatry might have something to offer. The patient was puzzled but polite about why a psychiatrist was consulted. Pizza in the pan.
It’s very difficult for physicians to convey, in all humility, “I don’t know, but I still care.” The reasons why are complicated. The push for medical certainty, the packed medical clinic schedules, the limited time to spend with patients. It’s easy to say we must reimagine the way we practice medicine. It’s very hard to do. It’s a lot harder than reimagining the path from pizza in the traditional pan to pizza in a cup.