Interesting article by one of my favorite science writers, Ed Yong, in The Atlantic starts out as a review of the “long-haulers” whose Covid symptoms don’t get better as expected. As an aside keep in mind that this does not mean that symptomatic people are still contagious, i.e. shedding virus. One of the big things we still don’t know about this disease are which symptoms come directly from viral devastation of various organs and which from the resultant immune response from the body.
But the interesting part of the article for me is Yong’s mapping of long-haul Covid infection to so-called medical gaslighting — the profession’s downplaying of patients’ physical complaints as being “all in their head” or caused by stress, especially in women and, as Yong points out, in communities of color. There is a long history of mysterious illnesses — most notably chronic fatigue syndrome (myalgic encephalomyelitis in the UK) and fibromyalgia — of unclear causes, debilitating chronic symptoms, and no clear treatments.
Clusters of ME/CFS have followed many infectious outbreaks and even those medical professionals who take them seriously and do not dismiss them as purely psychiatric syndromes may be forgiven for failing to recognize that they probably cannot be reduced to being merely longterm or chronic variants of their mother diseases. Long ago I wrote a book chapter on controversial syndromes on the medical-psychiatric borderline. I focused on chronic fatigue syndrome and was guilty as charged myself, reviewing the data that it was essentially chronic Epstein-Barr virus infection. And in recent years I have lectured and taught about what some of us have described as chronic Lyme disease. Not that I am any kind of expert on these conditions. In fact, that is exactly the point — that this should be in the domain of the immunologists or infectious disease specialists rather than the psychiatrists. It is too soon to see if my non-psychiatric colleagues will begin sending post-Covid patients to us to treat postviral syndrome symptoms as if they are “just” emotional reactions.
Dealing with a novel medical condition which the world had never seen even six months ago should humble healthcare providers by highlighting how much we operate in the realms of mystery and ignorance. On the front lines, the dizzying pace of refining our approach in the face of such a moving target has been unprecedented. The unfortunate cases in which Covid infection appears to simply not go away may actually help us to finally realize that there may be a common syndrome affecting some with systemic infectious diseases. Much as we have stopped diagnosing or teaching about chronic Epstein-Barr, we should perhaps stop considering entites like “chronic Lyme” or “long-haul Covid” to be distinct entities and acknowledge the commonalities.
Several teams of investigators are already planning studies of Covid infection survivors to see if any become ME/CFS patients. A unifying conception would help stigmatized patients and might actually point the way to elucidating underlying mechanisms that might facilitate therapeutic interventions, And, established as having real, albeit complicated, causes, maybe psychiatrists like me should stop considering them to be in our province, the province of “all in the head”, at all? Mental health providers are going to have their hands full as it is helping with the devastating neuropsychiatric and emotional consequences of this pandemic.
As Yong concludes:
Perhaps COVID-19 will … galvanize an even larger survivor cohort. Perhaps, collectively, they can push for a better understanding of neglected chronic diseases, and an acceptance of truths that the existing disability community have long known. That health and sickness are not binary. That medicine is as much about listening to patients’ subjective experiences as it is about analyzing their organs. That being a survivor is something you must also survive.