Suffering without Remedy: The Medically Unexplained Symptoms of Fibromyalgia Syndrome and Long COVID
Abstract
:1. Introduction
Situating Fibromyalgia Syndrome & Long COVID
2. Diagnostic Categories and Illness Experiences
2.1. Fibromyalgia Syndrome as Diagnosis
2.2. FMS as Illness Experience
2.3. Long COVID as Diagnosis
- Post-COVID-19 Condition, The World Health Organization: Post-COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. (Source: https://www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition Accessed on 1 August 2024)
- Post-COVID-19 Syndrome, The United Kingdom National Institute for Health and Care Excellence (NICE): Signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis. (Source: https://www.nice.org.uk/guidance/ng188/chapter/1-Identification#case-definition Accessed on 1 August 2024)
- Post-COVID Conditions, The United States Centers for Disease Control: An infection-associated chronic condition that can occur after SARS-CoV-2 infection, the virus that causes COVID-19, and is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ system. (Source: https://www.cdc.gov/covid/long-term-effects/?CDC_AAref_Val = https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/ Accessed on 1 August 2024)
- Post-Acute Sequelae of SARS-CoV-2 Infections, United States National Institutes of Health: Long-term effects of COVID may be different for everyone and they can affect many different parts of the body, such as the brain, heart, and lungs. And people who have PASC, including Long COVID, can have different kinds of effects. These effects may come and go, and they may last for a few weeks, a few months, or longer. (Source: https://recovercovid.org/long-covid Accessed on 1 August 2024)
2.4. Long COVID as Illness Experience
3. Feminization-Medicalization and Suffering without Remedy
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
1 | We appreciate the critiques of the term MUS, namely that it can reify the mind/body dualism, privilege medical knowledge over lay knowledge, and give way to dismissal of the patient’s lived experience. In fact, it is precisely for these reasons that we foreground “MUS” in our analysis. We do not use the term uncritically, as indicated by our use of quotation marks. |
2 | In practice—both in medicine and popular discourse—the term “Long Covid (LC)” is used inconsistently. We are likewise guilty. To avoid a tedious level of detail and qualifying statements, we use the term “LC” in two distinct ways. First, to capture all the different labels medicine has proposed to describe the range of health problems with possible links to a SARs-CoV2 infection. Because there are many different labels in play, we adopt “LC” for the sake of readability. We also use “LC” to describe the narrower subcategory of these conditions that includes an array of nonspecific symptoms in the wake of a COVID-19 infection that remain otherwise medically unexplained (Pfaff et al. 2022). We have tried to write around this inconsistency in ways that help the reader know which of these meanings we imply in a given context. |
3 | As a concept and process, medicalization is complex: There are different degrees and dimensions of medicalization and demedicalization; there are multiple and competing forces (inside and outside the institution of medicine) contributing to and resisting medicalization; some people (and places) experience more medicalization than others (Bell and Figert 2012); and these forces have changed and continue to change over time (Clarke et al. 2003; Conrad 2005). Even in the face of some emerging pockets of resistance and countervailing forces (Light 2001; Conrad 2005), the drive toward medicalization or biomedicalization is a marked feature of life in the global north. |
4 | Parenthetically, medicine’s mind/body dualism is a cultural artifact that our analysis rejects. |
5 | The role of central sensitization or nociplastic pain in FMS “remains to be elucidated” (Wolfe and Rasker 2021, p. 15). |
6 | The 2010 revisions eliminated tender point exams and formally recognized FMS as a multi-symptom rather than only a pain disorder. |
7 | Tender points are far more common in women than men, and, despite removing them from official diagnostic criteria in 2010, they are routinely used for diagnostic purposes by rank-and-file clinicians. |
8 | Wolfe traces the “idea of fibromyalgia” and notes that “[t]he future of fibromyalgia as a discrete disorder remains uncertain as features of fibromyalgia are increasingly observed in patients with multiple different medical conditions” (Wolfe and Rasker 2021, p. 1). |
9 | “Long COVID can sometimes be attributed to organ damage and well-characterized pathophysiology, but more often there is no evidence of organ damage or abnormal biomarkers. This is most evident in patients with mild to moderate initial SARS-CoV-2 infection who were not hospitalized” (Goldenberg 2024). |
10 | Without getting into the weeds, these conditions might also, for research purposes, be considered examples of PASC as defined by the NIH. The NIH category of PASC does include what is now understood as LC, as well as post-intensive care illnesses and end-organ diseases. This category is the messiest of those put forth. It is not widely used clinically to diagnose what has emerged as the phenomenon of LC. We imagine a time in the near future when PASC will fall out of favor and/or morph into something in line with the NICE and WHO definitions. Eventually, a single definition and set of criteria will be proposed. But, as the case of FMS suggests, this can be an ongoing process stretching out decades. |
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Moretti, C.; Barker, K.K. Suffering without Remedy: The Medically Unexplained Symptoms of Fibromyalgia Syndrome and Long COVID. Soc. Sci. 2024, 13, 450. https://doi.org/10.3390/socsci13090450
Moretti C, Barker KK. Suffering without Remedy: The Medically Unexplained Symptoms of Fibromyalgia Syndrome and Long COVID. Social Sciences. 2024; 13(9):450. https://doi.org/10.3390/socsci13090450
Chicago/Turabian StyleMoretti, Chiara, and Kristin Kay Barker. 2024. "Suffering without Remedy: The Medically Unexplained Symptoms of Fibromyalgia Syndrome and Long COVID" Social Sciences 13, no. 9: 450. https://doi.org/10.3390/socsci13090450