While most of the world’s medical personnel were challenged with understanding and treating the severe acute effects of the new coronavirus pandemic, long COVID was identified in May 2020 by patients who were experiencing ongoing debilitating problems.
According to estimates, as many as 24 million people in the U.S. may have long COVID — also known as “long haul COVID” or post-acute sequelae of COVID-19. This substantial population of long COVID patients will challenge the health systems, productivity, and stability of society in ways we have yet to comprehend. While Omicron and its cousin subvariants infect a larger proportion of the population, though seem to cause less serious acute disease, it may present a near catastrophic challenge if the same proportion of Omicron patients are afflicted with long COVID and become disabled.
As researchers and clinicians hasten to understand the specifics and complexities of this syndrome, it is important to understand that some aspects of long COVID represent an epistemic complexity. However, this is not the first time medicine has seen a condition without an obvious physical cause or a clear approach to treatment. Until more effective medical interventions based on pathophysiology are established, patients suffering the brain fog and fatigue syndromes may benefit from exploring the interventions of complementary and alternative medicine — as has been done with other contested diseases.
There is a long list of contested diseases such as chronic fatigue, chronic Epstein-Barr infection, fibromyalgia, multiple chemical sensitivity, chronic Lyme disease, and mold illness associated with fatigue and brain fog without any generally recognized abnormal physiologic tests or signs. Mainstream medicine had difficulty comprehending, diagnosing, and treating these patients, often offering a suggestion to see a psychiatrist, with the thought that these conditions may be psychogenic rather than physiologic. However, neither antidepressants nor anti-anxiety medications consistently help these conditions. In 2015, the National Institute of Medicine of the National Academies of Sciences, Engineering, and Medicine bit the bullet and did an extensive evaluation of chronic fatigue resulting in the determination that these patients have a “real disease,” now known as myalgic encephalomyelitis. Yet, pathophysiology and treatment remained uncertain.
Now along comes long COVID with a large population complaining of brain fog and fatigue and having no abnormal signs or tests. Initially it was reasonable to lump all patients who had prolonged complaints and problems after clearly recovering from acute SARS-CoV-2 disease into one group or syndrome — long COVID. The World Health Organization developed a consensual systematized definition of long COVID intended to cover the whole population of patients. Most ongoing epidemiology and research continues to consolidate all patients with prolonged complaints into one category. Given the prior skepticism, rejection, and neglect of “contested diseases,” patients with brain fog and fatigue must be separated out for special attention. Currently, the incidence and demography of these patients remains to be defined as many surveys based on patient support groups (comprised largely of brain fog/fatigue patients) consist primarily (90% in some studies) of white, educated women. This is similar to the demography of some other contested diseases. The incidence and prevalence of long COVID in minority populations and males has yet to be defined.
Contemporary physicians, educated in a culture of specialization based on organ systems and trained to be dependent on signs, tests, and evidence, are ill-prepared to deal with patients with disabling conditions but no objective abnormalities, no demonstrable signs, abnormal tests, nor well-defined pathophysiology. According to Ed Yong, reporting in The Atlantic, “When the National Institutes of Health ran a two-day conference on long COVID in December, the long-hauler Angela Meriquez Vázquez was shocked at how few talks were relevant to her. ‘It just felt like, Have you talked to any of us?’ says Vázquez, who is the vice president of Body Politic, a wellness organization that hosts a popular long-hauler support group.” The treatments offered in the limited number of specialized clinics, although concerned and supportive, could be largely ineffective for this patient population, as no effective pharmacologic or other intervention has been established.
Meanwhile, like patients with contested diseases in the past, long COVID patients have turned to complementary and alternative medicine. These approaches, regardless of school, are symptom based and involve extensive talking and attention to the lived experience of the patient. Mainstream allopathic medicine and complementary medicine are currently accommodating each other’s paradigms in interesting ways. On the one hand, alternative practitioners increasingly use their own objective tests (signs) such as hair minerals, nutritional panels, and non-traditional antibody tests to confirm diagnoses made within their paradigm. On the other hand, after long criticizing naturopathy’s emphasis on diet purity, nutrition, vitamins, and avoidance of antibiotics, allopathic medicine is discovering the broad significance of the intestinal microbiome. There are also sophisticated academic studies and reviews describing possible similar pathophysiologic causes in long COVID and certain previously contested disease syndromes. Long COVID patients are challenging the knowledge of both allopathic and complimentary schools.
It remains to be seen how effective complementary approaches will be, but they can offer important support to the long COVID patient population. At present, the culture, style, and tools of contemporary allopathic medicine alone may be insufficient to help the many patients with general fatigue and brain fog, except with supportive advice. Until the pathophysiology of long COVID is unraveled, the methods of complementary and alternative medicine are worth exploring further.
Jeoffry B. Gordon, MD, MPH, is a retired family physician and former community hospital bioethics consultant. He is a member of the People’s CDC team.