A Syndrome in Search of a Virus - ME/CFS, Disease Paradigms, and the Social Function of Pathogens, Emily Lim Rogers, 2024

[Kalliope]

Journal: Osiris

Abstract

In 1984, a team of American researchers led by Robert Gallo announced that HIV causes AIDS. Seven months later, the US Centers for Disease Control investigated a postviral illness of unknown cause, which would later be known as chronic fatigue syndrome (aka myalgic encephalomyelitis, or ME/CFS).

This article argues that ME/CFS’s emergence was entangled with HIV/AIDS. Once the cause of AIDS was widely agreed upon by the 1990s, the virus-to-syndrome model became the predominant paradigm for understanding syndromic diseases of as-yet unknown cause.

At the same time, ME/CFS—a multicausal illness—failed to fit this template, and societal disinterest fell in. Scientific uncertainty sustains the status of ME/CFS as proximate to, but not fully accepted as, bona fide “disease.”

This has implications for the history of disability and the history of medicine, as ME/CFS sits uneasily between these bodies of knowledge, demonstrating the thorny and socially overdetermined process of medicalization.

https://www.journals.uchicago.edu/doi/10.1086/730432

 

[Lou B Lou]

Emily Lim Rogers:

'Once the cause of AIDS was widely agreed upon by the 1990s, the virus-to-syndrome model became the predominant paradigm for understanding syndromic diseases of as-yet unknown cause.'


No, the virus-to-syndrome model did not become the 'predominant paradigm for understanding syndromic diseases of as-yet unknown cause' - the psychosocial model was engaged immediately and ran wild, proliferating all over the place and used gaslighting ME as a template for grabbing other diseases and psychologising them, diverting research funds from biomedical studies to endless low quality psychosocial studies.




And Emily Lim Rogers is writing a book about us, framing bed as a safe haven.

https://www.emilylimrogers.com/book

'Akissi Nzambi, “My bed: a safe haven and a net that keeps me trapped” (2020)

Image description: against a sky-blue background, cotton balls are laid out resembling a cloud or pillow. Below, stretched-out, translucent medical gauze is laid out in a rectangular shape, resembling both a bed and nets. Below, a caption reads, “My bed: a safe haven and a net that keeps me trapped.”



She is studying the wrong people. But studying the people with the actual power, the people who set the agendas for framing the disease as psychosocial, who claim most of the research funding, who have apparently unlimited influence over media portrayal of ME, who established 'Narrative Based Medicine' (unevidenced repetitive stories, consisting of Rhetoric, Narrative and messing with Language) but calling it Evidence Based - that would be a challenge and require Emily Lim Rogers to justify and defend her work beyond her limited academic sphere.

Whereas using disempowered patients who are too sick to fight back (lab rats) looks like the soft option.


My head is expanding on this but am too sick to write more.

.

 

[Trish]

I don't remember coming across this author before. She has written other articles and done talks on the subject. Since I can only read the abstract and book description that's full of jargon, I can’t fathom her views or conclusions.
It looks like the book will be based on her PhD thesis.

 

[rvallee]

Once the cause of AIDS was widely agreed upon by the 1990s, the virus-to-syndrome model became the predominant paradigm for understanding syndromic diseases of as-yet unknown cause

Wat? Even with Long Covid medicine is unable to accept the bloody obvious. Hell even with acute COVID the refusal to acknowledge that respiratory diseases have to involve airborne transmission is holding everything back. They'd rather continue giving the wrong advice, wash your hands, than consider the role of pathogens in disease.

In fact medicine is deeply in denial about the role of not just pathogen, but of environmental factors as a whole. Air pollution kills millions per year and causes many times more chronic illnesses, and yet MDs are far more likely to advise people to go out and do sport in polluted air than ever say anything about how industrial causes of health problems need to be factored in overall costs.

Just look at how POTS, the most easily observable consequence of Long Covid, is obsessively blamed on social media rather than the freaking virus itself. How do people even come up with stuff like that?

 

[Andy]

Same author, Recursive Debility: Symptoms, Patient Activism, and the Incomplete Medicalization of ME/CFS, 2022, Lim Rogers

 

[Jonathan Edwards]

Waiter! My word salad is incompletely medicalised.
My apologies, Sir, I will bring another one.
And another.

 

[boolybooly]

I guess this is Emily's page.

https://www.emilylimrogers.com/

I am interested in the politics of medicine; in particular, in how disabled and chronically ill people contend with debility when hegemonic forms of explanation and treatment fail. I examine this in the context of the United States, where biomedicine plays a particularly central role in adjudicating what kinds of lives people can lead.

Is that actual sympathy for the plight of PWME? Its hard to tell with the mind boggling sentence structures plus the legacy of paranoia, since one is so used to being love bombed and gaslit by BPS proxies trying to upend common sense.

Maybe she means well and if she is interested by treatment failure then she has a rich vein to mine in ME/CFS.

 

[Jonathan Edwards]

I am afraid I see this as pseudo-academic voyeurism.
The historical stuff is all plain wrong anyway.