Long COVID: Alice Evans, brucellosis, and reflections on infectious causes of chronic disease, 2023, Smith, Tara C

SNT Gatchaman

Senior Member (Voting Rights)
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Long COVID: Alice Evans, brucellosis, and reflections on infectious causes of chronic disease
Smith, Tara C

Despite over a century of research on the link between infection and chronic diseases, we again find ourselves flummoxed by a new pathogen that causes long-term impairment. Patients have reported being ignored or minimized, resources are lacking for diagnosis and treatment, and frustrated individuals are turning outside of the scientific profession for answers.

The experience mirrors that of American Society for Microbiology past president, Alice C. Evans. Accidentally infected with Brucella melitensis during her laboratory research, Evans was chronically ill for more than 20 years, during which time friends, colleagues, and physicians cast doubt on her illness. As a result, she argued passionately for improved diagnostics, and for those who reported chronic infection to be taken seriously rather than presumed to be “malingering” or using their illness for financial benefit. Lessons from Evans’ experience are useful as we work toward understanding long COVID and patients suffering from the condition.

Link | PDF (Clinical Infectious Diseases)
 
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She took special offense to publications in the 1950s by researchers she felt were dismissive of chronic brucellosis in exposed Fort Detrick workers, and to an idea put forward by physician Wesley Spink, who wrote that a diagnosis of chronic brucellosis was used as a crutch by “tense and neurotic patients” and that such claims of long-term illness were made to benefit the patient financially: “For the most part brucellosis is an occupational disease and the interpretation of chronic illness can be the result of disability insurance”.

A limitation of long COVID understanding is the very frustration Evans expressed 90 years ago and reiterated in later publications: a lack of definitive diagnostic testing. Though some biomarker testing is in development, and diagnostic testing for some aspects of illness exist (such as tilt table tests for postural orthostatic tachycardia syndrome (POTS) and MRI scans for cardiovascular issues, reviewed in), a lack of universal case definition and definitive testing to confirm long COVID is detrimental to aspects of treatment, diagnosis, and a better understanding of the overall epidemiology of the condition.

Lacking such clear objective diagnostics clearly harms patients. As Evans experienced in her time, many long COVID patients today report “medical gaslighting” with physicians suggesting that their symptoms are “psychosomatic” or merely due to “anxiety,” reflections of Evans’ battle with the diagnosis of “neurasthenia” almost a century ago.

Many long COVID patients today will recognize the fatigue Evans describes in her request for work-from-home accommodations, and the frustration she describes at her colleagues’ suggestion that chronic Brucella infection is merely an excuse to collect disability insurance.

We should look back at Evans’ struggles a century ago with disappointment at how she was treated. We should reflect on how that is being repeated still today with long COVID.
 
Long COVID: Alice Evans, brucellosis, and reflections on infectious causes of chronic disease
Smith, Tara C

Despite over a century of research on the link between infection and chronic diseases, we again find ourselves flummoxed by a new pathogen that causes long-term impairment. Patients have reported being ignored or minimized, resources are lacking for diagnosis and treatment, and frustrated individuals are turning outside of the scientific profession for answers.

The experience mirrors that of American Society for Microbiology past president, Alice C. Evans. Accidentally infected with Brucella melitensis during her laboratory research, Evans was chronically ill for more than 20 years, during which time friends, colleagues, and physicians cast doubt on her illness. As a result, she argued passionately for improved diagnostics, and for those who reported chronic infection to be taken seriously rather than presumed to be “malingering” or using their illness for financial benefit. Lessons from Evans’ experience are useful as we work toward understanding long COVID and patients suffering from the condition.

Link | PDF (Clinical Infectious Diseases)

It is startling how little changes. And how poor and limited the medical and research establishments are in their ability to manage ambiguity and uncertainty, especially for conditions affecting predominantly women.
 
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