As Their Numbers Grow, COVID-19 “Long Haulers” Stump Experts | Infectious Diseases | JAMA | JAMA Network
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Medical News & Perspectives
September 23, 2020

As Their Numbers Grow, COVID-19 “Long Haulers” Stump Experts

JAMA. 2020;324(14):1381-1383. doi:10.1001/jama.2020.17709

For 32-year-old Hanna Lockman of Louisville, Kentucky, it all started March 12. She was at work when she suddenly felt a stabbing pain in her chest.

“It just got worse and worse and worse, to the point I was crying from the pain,” she recalled in a recent interview. At 3 am, the pain sent her to the emergency department. “I had developed a dry cough, maybe a mild fever. I don’t remember.”

Five months, 16 emergency department trips, and 3 short hospitalizations later, Lockman can’t remember a lot of things. She places the blame squarely on coronavirus disease 2019 (COVID-19).

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    6 Comments for this article
    Long Haul COVID-19 is an Endothelial Disease
    Jacqueline Lopez, M.D. | California State Polytechnic University Pomona
    COVID-19 is an endotheliopathy with protean manifestations. Attributing long-haul COVID-19 symptoms to poorly understood conditions such as CFS or POTS is a step in the wrong direction. Clinicians are using these wastebasket diagnoses because they are unfamiliar with endothelial disease. We need research to determine whether viral persistence and/or an aberrant immune response underlie the continued symptoms in long-haulers, but we also need to reeducate our medical workforce to recognize and treat endothelial dysfunction and dysautonomia.
    Secondary Gain
    John Kaplan, MD | Dr. John's Nutrition Health
    How are you controlling for or factoring for people who may get a secondary gain in reporting persistent symptoms, with or without serologic or PCR-confirmed Covid- 19? Our dependent culture often gives status and/or or compensation to those reporting persistent symptoms. The cultural dislocation, financial stresses, and persistent political warfare over the SARS-CoV-2 pandemic must certainly provoke opportunistic complaints in a subset of patients with persistent somatic symptoms.
    Post-Covid Asthenia
    H Silverstein, MD (FACC) | Private Internal Medicine Practice
    For almost all medical conditions there are identifiable risk factors. These may have to do with environmental factors, dietary exposures and lifestyle, mental status (resilience, depression, anxiety), strength of the viral attack and response, and genetic predispositions. There may be other predisposing entities. These need to be identified to define why the post Covid asthenia occurs and persists.
    Postviral syndromes are not new
    Emily Casanova, PhD, Biomedical Science | University of South Carolina
    The recognition of postviral syndromes is not new to the chronic illness community and the clinicians who treat them and scientists who study them, nor is the extreme sex-skewed nature of these conditions. While an endotheliopathy may indeed be an important consideration, the extreme sex-skewed nature of this particular postviral syndrome suggests that, like its idiopathic counterparts, differences in immune activation between the sexes are likely key in many cases. For instance, innate immune/autoimmune disorders are often triggered by viral infection, severe injury, surgery, pregnancy, and even severe emotional stress. Therefore, viewing this postviral syndrome under the framework of other syndromes such as ME/CFS, POTS, MCAD, etc., could still be useful to clinicians and scientists studying this subpopulation, at least during early days. Most of these idiopathic conditions are not considered primary disorders anyways and are undoubtedly very heterogeneous in nature, but they are useful labels that help direct patient care and predict outcomes.

    On a separate note to clinicians, please be cautious about psychosomaticizing patients presenting with these symptoms as gas-lighting has the potential to cause significant harm to the patient that cannot be easily undone, both in terms of psychological trauma (many chronically ill patients suffer from medically-induced PTSD) and additional harm due to potentially inaccurate/incomplete psychiatric diagnoses that can follow a patient on her/his chart for years, permanently affecting her/his quality of care in future. This is an extremely common problem for many women, in particular, with chronic illnesses that we as clinicians and scientists need to take even greater caution to avoid.

    As with many immune disorders, immune modulators can have significant neuroactive effects (e.g., febrile seizures as an extreme example, the result of IL-1 activity) and anxiety/depression can often be symptomatic of these chronic medical conditions. Therefore, we need to be cautious about interpreting these psychiatric symptoms as causal. Likewise, peripheral nerve damage is a common feature in these chronic conditions, which research suggests may have a lower threshold for excitation in reaction to neuromodulators than the healthy nerve. Therefore, physical symptoms may be easily top-down "neuroreactive" but not truly "psychosomatic." The pathology is still within the peripheral tissues, not the result of a psychiatric disorder.

    In addition, any person who has suddenly lost her/his health, mobility, etc., would be pathological if she/he were NOT devastated and over-focused on her/his sudden disability. This is a normal, healthy reaction to a major and traumatic loss.
    Norman Ratliff, MD, FACC | Chief of Cardiology, Gila Regional Cardiology Services
    This post-viral syndrome is real and incredibly debilitating. Yes, the endothelium is involved but so is the autonomic nervous system, mitochondrial function and immune system derangement to name a few others. The above comments do a disservice to the millions of patients suffering from this poorly understood disease.
    Experiences With 30 Cases, 5 Families of 2-3 "Long Haulers"
    Gregg Grinspan, MD | Private Practice
    We now have about 30 patients who would fit the "long hauler" definition. They have repeat episodes of some or all of the clinical symptoms of covid. We've seen five families in which 2 or 3 family members share the same stuttering course for months with slightly different symptom complexes in a single family.

    What is inexplicable in all that I've read concerning the possible etiology of this chronicity is the symptom-free periods. These can last a few hours to almost a week and most of these patients will say that they felt
    like it was finally over. When probed it's really the "fatigue", the loss of desire, the ambitionless state, that has lifted that gives them the breath of renewed energy/feeling alive again, but the other symptoms fall away as well. And then the next morning or a few days later they awaken with the full return of their particular symptom complex. From a clinician of over 40 years experience with as many cases as we've followed, this is organic not functional.

    What is it that is being presented to the immune system that then disappears? Where is this antigen sequestered? Could there be live virus or fragments of virus responsible? We've all read the theories. None explain the complete resolution of symptoms. It's as though the stovetop goes from full heat for 2-3-4 weeks to cool enough to lay on a hand without a burn in hours. What moves the antigen to activation energy? Seems that something that triggers the generalized immune reaction in multiple organ systems has an on/off switch. Where is the serious work on this underlying basic scientific question being done? I'd like a conversation with them.