Socially constructed and structurally conditioned conflicts in territories of medical uncertainty

Free full text:
https://link.springer.com/article/10.1057/s41285-018-00082-w


Social Theory & Health

pp 1–17 | Cite as

Socially constructed and structurally conditioned conflicts in territories of medical uncertainty

https://twitter.com/user/status/1068906871703171074

 

Very good to see that written down

Now - change?

 

The main author, prof. in sociology Olaug Lian, published in 2015 "United we stand": Framing Myalgic Encephalomyelitis in a Virtual Symbolic Community

Abstract
In this article, we report on a study that seeks to explore how the contested chronic condition myalgic encephalomyelitis (ME), one of the current medical diagnoses for medically unexplained long-term exhaustion, is negotiated within the context of Norwegian internet sites. From an analysis of discussions on 14 internet forums sustained by and for people living with ME, we seek to understand how their online activity sustains a virtual symbolic community (VSC). After exploring the content on these sites, we identified four discursive domains, or fields of conversation, that are demarcated by a discursive frame, or norms, values, and goals that define and reinforce the boundaries of the community. Interpreting discursive domains and their discursive frame provides insight not only to the culture of the ME VSC but also to its role in an international social health movement, including its potential for becoming politically influential.

 

Through positive and negative descriptions, our study participants articulate—directly or indirectly—the same basic expectations and experiences. Regarding expectations, the core message that runs through both datasets is that caregivers ought to

1. acknowledge the lack of medical knowledge; be frank, open and curious about medical uncertainties, and approach their condition with an open mind and a willingness to learn more (and above all, do not profess knowing what is not known);
   
2. believe patient experiences and the reality of their illness;
   
3. avoid moral blaming of patients;
   
4. treat patients with human dignity by demonstrating confidence, trust, respect, compassion, sympathy and understanding; and
   
5. share decision-making authority with patients in a collaborative partnership.
   

 

I wish it could have included something about why a disease like ME hasn't been prioritised in medical research and thus was doomed a faith as medically unexplained. I also miss a critical discussion about the term "medically unexplained" (I've just skimmed the article, perhaps it's included and I just missed it)

 

IMHO, This is the only method in which the category of medically unexplained physical symptoms makes any sense. Instead of speculating about a common underlying cause (somatization, stress, central sensitization), the study investigates the challenge to deal with medical uncertainty.

There are some interesting quotes in this article:

"Participants acknowledge the lack of medical knowledge about their illness, and they expect health professionals to do the same."

[...]

ME patient: "Why can’t doctors simply admit that they know little about this – instead of humiliating and mocking the patient when they are uncertain?"

[...]

“Participants’ strongest aversion is against health professionals who claim to know what is not known by proclaiming psychogenic explanations of their illness, or characterise it as fake or non-existent.”​

I hope a lot of doctors/researchers will read this. Too bad it has a weird title with abstract terminology as used in sociology.

 

I've highlighted that now:
https://twitter.com/user/status/1068937309960224768

 

I'd like to add two points of my own:
6) Stop conflating ME with fatigue.
7) Believe that patients can get permanently worse by being pushed beyond their threshold.