Framing the activists: gender, race, and rhetorical disability in contested illnesses [ME/CFS & Long Covid], V. Jo Hsu, 2023

cassava7

cassava7

Senior Member (Voting Rights)
For the past five decades, patients with myalgic encephalomyelitis (ME) have struggled against the stereotype that their symptoms are “all in their heads.” With ME now appearing in roughly half the cases of long COVID (LC), some researchers and journalists have recycled old mythologies about ME.

This essay applies frame analysis to scientific and mainstream discourse surrounding ME and LC to ask how dominant scripts about disability, gender, and race constrain scientific and cultural growth in the context of contested diseases. Drawing from James Cherney’s work on ableist rhetoric, this essay examines how novel frames repackage staid assumptions that dismiss pain in people marginalized by race and/or gender.

ME and LC, as poorly-understood illnesses, provide illustrative case studies of how longstanding bias quietly fills argumentative gaps in scientific and popular discourse. Amid rapidly unfolding public health crises, rhetorical analyses provide crucial insight into how prejudicial beliefs get encoded into disciplinary and public deliberations.

Paywalled link (Quarterly Journal of Speech): https://www.tandfonline.com/doi/full/10.1080/00335630.2023.2291895
 
Too bad it's paywalled.

I like the phrase "longstanding bias quietly fills argumentative gaps in scientific and popular discourse."

I can visualize the bias spreading and coating the area, sliding into the gaps, like syrup on pancakes.

An enjoyable, sweet, filling, and reassuring meal, telling the so-called "mainstream" that there is no need to bother with pwME or LC, as it is entirely of their own making.
 
What we have struggled against is bad science. When a bunch of psychiatrists take control of the research funding and misuse it to twist research methodology to 'prove' they are right, and it suits governments, insurers and health services to support their myths, patients are harmed, regardless of our gender and race.

Edit: Written on the basis of the abstract only. See below for comment on the whole article.
 
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I have read the whole article. I think it's an interesting and well researched article with some very good points, setting ME in the wider context of disability, gender and race discrimination. It's good to see Wessely and Sharpe and the whole PACE trial tribe being identified as harmful and wrong. And brings it up to date with the same things happening in Long Covid.

This section references a George Monbiot article as the source:

Adding to the confusion around long COVID, PACE investigators like Michael Sharpe have positioned themselves as experts on both diseases. In 2021, Sharpe pre-sented on long COVID for Swiss Re, one of the largest reinsurers in the world. He argued that “social factors” including sympathetic media coverage, patient support groups, and supportive physicians could induce or spread long COVID. 130 Repeating what BPS researchers have insisted for years about ME, Sharpe told Swiss Re that “the best treatment” for long COVID “is psychologically informed rehabilitation.”
Click to expand...
 
This is a long article which I thought was very good and which with a big effort I managed to read. I doubt if many will do so in its entirety. So as we're now in 2024, I thought it might be helpful to use AI in the form of Claude.ai to summarise it. This may be useful for some although I feel it omits much of the backstory of the original by not mentioning the The Royal Free, Pace trial etc.. Reading the full article may still be preferable for those who can manage it and can cope with all the information.

Here's Claude.ai's summary:

- The article discusses how myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been persistently framed as a psychosomatic or psychiatric condition despite evidence that it is a physiological disease.
- ME/CFS, which causes debilitating fatigue and other symptoms after physical or mental exertion, has been dismissed as "hysteria" and its sufferers, who are disproportionately women, accused of exaggerating or feigning their symptoms.
- The author argues these dismissals rely on ableist assumptions that delegitimize the experiences of people with disabilities or mental illnesses. The stigma attached to psychiatric diagnoses has been used to discredit ME/CFS patients and advocacy.
- The article traces how the framing of ME/CFS as hysteria draws on sexist tropes of women as irrational, manipulative, and attention-seeking. This builds on a long history of pathologizing women's behaviors through hysteria diagnoses.
- Racist logics have also shaped hysteria as a white, middle-class phenomenon, excluding poor white women and women of color. ME/CFS patients have carried this racialized stigma.
- The article suggests ME/CFS dismissals perpetuate broader social inequities by framing challenges to power as irrational or suspect. Similar logics delegitimize activism around other issues like trans rights or racism.
- Overall, the article demonstrates how discriminatory logics persist despite shifting medical frames, providing a case study of how social biases become embedded in science and media.
 
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