Chandelier
Senior Member (Voting Rights)
Machine translated title:
Is Sport Always a Good Thing?
Historical Instrumentalizations and Challenges of (Lay) Medical Health Knowledge and Imperatives to Exercise in the Context of ME/CFS
Wittmann, Barbara
In a social media post concerning medical assistance for people affected by Post-COVID conditions, ME/CFS activist Sibylle Dahrendorf, who wrote this, went on to say:
“People simply cling to something that is toxic for those affected: #rehabilitation.”[1]
Web | DOI | Jahrbuch für Europäische Ethnologie | Paywall
Is Sport Always a Good Thing?
Historical Instrumentalizations and Challenges of (Lay) Medical Health Knowledge and Imperatives to Exercise in the Context of ME/CFS
Sport ist immer gut?
Historische Instrumentalisierungen und Herausforderungen von (laien-)medizinischem Gesundheitswissen und Bewegungsimperativen durch die Erkrankung ME/CFS
Historische Instrumentalisierungen und Herausforderungen von (laien-)medizinischem Gesundheitswissen und Bewegungsimperativen durch die Erkrankung ME/CFS
Wittmann, Barbara
First two pages from a preview (machine translation):
“I’ll say it again: I walked into the clinic in 2017/2018 and came out in a wheelchair. Nobody wants to learn from the terrible experiences of thousands of people who went through this years BEFORE the pandemic.”In a social media post concerning medical assistance for people affected by Post-COVID conditions, ME/CFS activist Sibylle Dahrendorf, who wrote this, went on to say:
“People simply cling to something that is toxic for those affected: #rehabilitation.”[1]
What the activist, who herself has been ill for more than a decade, is objecting to here are rehabilitation measures for people who continue to suffer the consequences of their COVID-19 infection and that are based on physical exercise and, consequently, bodily activation.
Although, as a result of the successful development of vaccines and the emergence of milder virus variants, the immediately life-threatening dangers have now diminished, and SARS-CoV-2 viruses consequently appear to have become scarcely present in everyday culture, the long-term consequences of the pandemic have by no means been overcome—neither at the societal nor at the individual level. This applies above all to those people who, under the designation Post COVID,[2] continue to struggle with sometimes severe physical limitations and whose symptoms lead to a chronic condition equivalent or similar to the clinical picture of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), which was already known before the pandemic.
The fields of research into Post COVID and ME/CFS are just as opaque, complex and, not least, contested as the discourses surrounding the virus itself. While the pandemic has intensified social divisions and, in some cases, created new ones, the way in which the consequences of the disease are addressed also exposes deep rifts that had already existed but had been largely ignored both publicly and medically. Long-term damage caused by viruses is not a symptomatic novelty; such damage has generally been known for a long time to occur, for example, following Epstein–Barr infections, influenza or SARS infections, and is regarded as one of the principal causes in the pathogenesis of ME/CFS.[3]
It is precisely at this point, however, that a complexity begins that is problematic not only for research in the social sciences and cultural studies: the classification of ME/CFS has been and remains controversial, both scientifically and in terms of therapeutic practice. This controversy is now continuing in the debates surrounding Post COVID. Although ME/CFS has been recognized by the WHO as a neurological disease since 1969,[4] it was largely excluded from medical research and medical training. Only the pandemic revealed the helplessness involved in caring for patients in the face of a backlog of several decades in the development of diagnostic and therapeutic procedures.
Explaining the current state of medical research on ME/CFS—a field that has rapidly gained momentum as a result of the estimated 65 million cases of Long COVID and Post COVID worldwide[5] and has been supplemented by numerous recent studies—can hardly be the task of a study oriented toward European ethnology and, consequently, the humanities. What such a study can contribute, however, is to examine, from a medical-anthropological perspective, the historically conditioned instrumentalizations of the disease as a framework for different perspectives shaped by their respective historical moments, as well as the experiences and...
2 While the term Long COVID is used for patients who continue to experience symptoms between four and twelve weeks after the actual viral infection, the designation Post COVID applies to the chronic persistence of symptoms from twelve weeks onward. See the information provided by the Robert Koch Institute: What is Long COVID? URL: https://www.rki.de/SharedDocs/FAQ/NCOV2019/FAQ\_Long-COVID\_Definition.html (accessed 26 February 2024).
3 Studies show, for example, that ME/CFS became chronic in up to one third of cases following the SARS pandemics of the early 2000s. See Lam, Marco Ho-Bun / Wing, Yun-Kwok / Yu, Mandy Wai-Man et al.: Mental Morbidities and Chronic Fatigue in Severe Acute Respiratory Syndrome Survivors: Long-term Follow-up. In: Archives of Internal Medicine 169 (2009), no. 22, pp. 2142–2147. DOI: 10.1001/archinternmed.2009.384. Studies have likewise examined the relationship between Epstein–Barr infections and ME/CFS for decades, for example Cameron, Barbara / Flamand, Louis / Juwana, Hedy et al.: Serological and Virological Investigation of the Role of the Herpesviruses EBV, CMV and HHV-6 in Post-Infective Fatigue Syndrome. In: Journal of Medical Virology 82 (2010), no. 10, pp. 1684–1688. DOI: 10.1002/jmv.21873.
4 World Health Organization: Manual of the International Statistical Classification of Diseases, Injuries, and Causes of Death Based on the Recommendations of the Eighth Revision Conference, 8th ed. Geneva, 1969, p. 173.
5 See the review study by Davis, Hannah E. / Mccorkell, Lisa / Vogel, Julia M. et al.: Long COVID: Major Findings, Mechanisms and Recommendations. In: Nature Reviews Microbiology 21 (2023), pp. 133–146. DOI: 10.1038/s41579-022-00846-2.
Although, as a result of the successful development of vaccines and the emergence of milder virus variants, the immediately life-threatening dangers have now diminished, and SARS-CoV-2 viruses consequently appear to have become scarcely present in everyday culture, the long-term consequences of the pandemic have by no means been overcome—neither at the societal nor at the individual level. This applies above all to those people who, under the designation Post COVID,[2] continue to struggle with sometimes severe physical limitations and whose symptoms lead to a chronic condition equivalent or similar to the clinical picture of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), which was already known before the pandemic.
The fields of research into Post COVID and ME/CFS are just as opaque, complex and, not least, contested as the discourses surrounding the virus itself. While the pandemic has intensified social divisions and, in some cases, created new ones, the way in which the consequences of the disease are addressed also exposes deep rifts that had already existed but had been largely ignored both publicly and medically. Long-term damage caused by viruses is not a symptomatic novelty; such damage has generally been known for a long time to occur, for example, following Epstein–Barr infections, influenza or SARS infections, and is regarded as one of the principal causes in the pathogenesis of ME/CFS.[3]
It is precisely at this point, however, that a complexity begins that is problematic not only for research in the social sciences and cultural studies: the classification of ME/CFS has been and remains controversial, both scientifically and in terms of therapeutic practice. This controversy is now continuing in the debates surrounding Post COVID. Although ME/CFS has been recognized by the WHO as a neurological disease since 1969,[4] it was largely excluded from medical research and medical training. Only the pandemic revealed the helplessness involved in caring for patients in the face of a backlog of several decades in the development of diagnostic and therapeutic procedures.
Explaining the current state of medical research on ME/CFS—a field that has rapidly gained momentum as a result of the estimated 65 million cases of Long COVID and Post COVID worldwide[5] and has been supplemented by numerous recent studies—can hardly be the task of a study oriented toward European ethnology and, consequently, the humanities. What such a study can contribute, however, is to examine, from a medical-anthropological perspective, the historically conditioned instrumentalizations of the disease as a framework for different perspectives shaped by their respective historical moments, as well as the experiences and...
Footnotes
1 Twitter account of Sibylle Dahrendorf, 22 August 2022. URL: https://twitter.com/sibylle\_berlin?lang=de (accessed 8 September 2023). While the names and abbreviations of forum contributors are generally anonymized in the article, those of activists who deliberately make themselves public are reproduced.2 While the term Long COVID is used for patients who continue to experience symptoms between four and twelve weeks after the actual viral infection, the designation Post COVID applies to the chronic persistence of symptoms from twelve weeks onward. See the information provided by the Robert Koch Institute: What is Long COVID? URL: https://www.rki.de/SharedDocs/FAQ/NCOV2019/FAQ\_Long-COVID\_Definition.html (accessed 26 February 2024).
3 Studies show, for example, that ME/CFS became chronic in up to one third of cases following the SARS pandemics of the early 2000s. See Lam, Marco Ho-Bun / Wing, Yun-Kwok / Yu, Mandy Wai-Man et al.: Mental Morbidities and Chronic Fatigue in Severe Acute Respiratory Syndrome Survivors: Long-term Follow-up. In: Archives of Internal Medicine 169 (2009), no. 22, pp. 2142–2147. DOI: 10.1001/archinternmed.2009.384. Studies have likewise examined the relationship between Epstein–Barr infections and ME/CFS for decades, for example Cameron, Barbara / Flamand, Louis / Juwana, Hedy et al.: Serological and Virological Investigation of the Role of the Herpesviruses EBV, CMV and HHV-6 in Post-Infective Fatigue Syndrome. In: Journal of Medical Virology 82 (2010), no. 10, pp. 1684–1688. DOI: 10.1002/jmv.21873.
4 World Health Organization: Manual of the International Statistical Classification of Diseases, Injuries, and Causes of Death Based on the Recommendations of the Eighth Revision Conference, 8th ed. Geneva, 1969, p. 173.
5 See the review study by Davis, Hannah E. / Mccorkell, Lisa / Vogel, Julia M. et al.: Long COVID: Major Findings, Mechanisms and Recommendations. In: Nature Reviews Microbiology 21 (2023), pp. 133–146. DOI: 10.1038/s41579-022-00846-2.
Web | DOI | Jahrbuch für Europäische Ethnologie | Paywall
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