2008: Electronic Support Groups, Patient-Consumers, and Medicalization: The Case of Contested Illness, Barker

[Woolie]

One for those who enjoy being wound up by this stuff. The main example they discuss is fibro, not ME, but that's unlikely to reduce your outrage.

It is interesting that this sociologist is unquestioningly buying into the assumption that those with contested illness are not really ill at all, just medicalising their completely normal symptoms. Its not just the psyc's and doctors then.

The paper is alarming widely cited (+200 citations).

Electronic Support Groups, Patient-Consumers, and Medicalization: The Case of Contested Illness*
KRISTIN K. BARKER
Journal of Health and Social Behavior 2008, Vol 49 (March):20–36

http://www.aleciashepherd.com/writings/articles/other/Electronic Support Groups.pdf

Some excerpts:

.. lay practices and knowledge are increasingly crucial factors in advancing consumer demand for the medical management of human problems in the twenty-first century. This article investigated an electronic support group for fibromyalgia sufferers as illustrative of this trend. Several processes have been identified whereby fibromyalgia sufferers utilize ESGs to contribute to the medicalization of their own experiences. These processes include illness reification, patients’ skeptical dependency on physicians, and the cultural authority conferred on embodied knowledge. …

I hypothesize that many new (electronic support groups) for sufferers of yet-to-crystallize syndromes will appear in the future, and here, too, we can expect to see similar mechanisms at work. Grounding their claims in embodied expertise, such online communities will demand that new functional somatic syndromes and other contested illness classifications be created and recognized. ….given our cultural impatience and intolerance for even low-grade pain and suffering, coupled with our strong desire to have these discomforts medically classified and treated (Barsky and Borus 1995; Kleinman 1986).

The potential magnitude of this trend is significant. After all, from one-third to half of the physical complaints seen in outpatient clinics are simply medically unexplainable (Kroenke and Rosmalen 2006). As individual sufferers of more and more symptoms (ranging from the mundane to the bizarre) interact with one another in cyberspace, we can anticipate many similar instances of consumer demand for new and con- troversial medical classifications to capture human suffering… Because lay knowledge relies on different rules of evidence than does medical and scientific knowledge (Brown 1992; Brown et al. 2004; Kroll-Smith and Floyd 1997; Popay and Williams 1996), (electronic support group) participants can easily come to different conclusions about their situation than do their physicians. Because there is no overarching authority to resolve these disputes (Collins and Pinch 2005; Giddens 1991), patient demand for medical goods and services they learn about online but that are not deemed necessary by physicians can broaden and intensify the medical management of already medicalized conditions. Insofar as patients recognize their potential conflict of interest with economizing health care providers and organizations, the managed care environment will increase the likelihood that patient-consumers will persist in realizing their demands…

 

[Samuel]

tsdr but same name as:

http://ojs-seed.neagen.it/index.php/rhc/article/view/280/html

Reviews in Health Care 2012; 3(4): 257-270
Diseases
Narrative review

Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Leonard A. Jason 1, Kristen Barker 1, Abigail Brown 1
1 Center for Community Research, DePaul University, Chicago, IL, USA

Corresponding author
Leonard A. Jason, Ph.D. Director, Center for Community Research,
DePaul University, 990 W. Fullerton Ave., Chicago, IL 60614

 

[Woolie]

Interesting find. I'm hoping the slightly different spelling means its not the same person:

Kristen Barker

I suppose if it is, then she changed her mind. That's encouraging.

 

[Samuel]

my bad for not noticing the name difference.

 

[petrichor]

Well, sociologists don't know anything about medicine, and there's loads of questionable theories that float around sociology. Sociologists really get off on any theories they make that sound mildly plausible, and really have a thing for trying to make themselves relevant.

 

[Amw66]

Well, sociologists don't know anything about medicine, and there's loads of questionable theories that float around sociology. Sociologists really get off on any theories they make that sound mildly plausible, and really have a thing for trying to make themselves relevant.

Sounds similar to some psychiatrists

 

[TiredSam]

One for those who enjoy being wound up by this stuff.

That'll be me.

When I was a university student, in the law library toilet someone had written on the toilet paper dispenser "Sociology degrees, please take one". After three years of wiping my arse on sociology degrees (I've since switched to the Guardian), I tried to give it a second chance later in life by listening to podcasts of radio 4's "Thinking Allowed" on my drive to work, but every time they interviewed a sociologist it seemed to be a woman with a speech impediment trying to use as many long words as possible and it was getting so pythonesque that I had to stop listening before I crashed my car laughing.

From this esteemed text we have:

Despite a few isolated cases of demedicalization (e.g., masturbation, homosexuality), Western societies have become increasingly medicalized (Clarke et al. 2003; Conrad and Schneider 1992).

Passing over the fact that sociologists seem to believe that all they have to do is frequently quote each other for some authoritative body of knowledge to magically come into existence, I look forward to the day when the above can be rewritten as:

Despite a few isolated cases of descientification (e.g.,sociology , psychotherapy), Western societies have become increasingly scientific (Some of my mates said the same ten years ago so it must be true).

 

[Luther Blissett]

Well, sociologists don't know anything about medicine, and there's loads of questionable theories that float around sociology. Sociologists really get off on any theories they make that sound mildly plausible, and really have a thing for trying to make themselves relevant.

They like to study broad chauvinistic declarations.

Sometimes they like to call these theories stereotypes. They study the harm stereotypes cause.

 

[Woolie]

Passing over the fact that sociologists seem to believe that all they have to do is frequently quote each other for some authoritative body of knowledge to magically come into existence...

!!!

LOVE it when people support their statements by mentioning some other person who believes as they do.

"Alien abductions occur frequently (Ted Smith from down the road, Travis Walton, Elvis Presley)."

 

[Cheshire]

Most of the sociology texts talking about ME I've read so far were blindly accepting the "no biological factor there" paradigm, hence patients are trying to fabricate a disease for psychosocial reasons. They're supposed to uncover the social factors of everything but they do not question at any moment the BPS view, which is taken as some kind of revealed truth exempt from human bias.

But if you think socilogy's been doing poorly, have a go at semiotics:
Medically unexplained physical symptoms, misunderstood and wrongly treated?
A semiotic perspective on chronic pain
http://www.tandfonline.com.sci-hub.tw/doi/abs/10.1080/09593985.2017.1422164?journalCode=iptp20

Right from the start, in the abstract, you've got this gem:

In a semiotic perspective, existential conditions may also activate the body’s defense systems.

Then...

A semiotic model can contribute to this at two levels. Being a meta-theory, it encompasses and integrates different fields of knowledge about illness and the human body, from the natural sciences, the social sciences, and the humanities. More directly, semiotics can elucidate the connection between certain bodily signs and circumstances in the patient’s life and perception of reality. We investigate the possibility that the unexplained symptoms carry a message and thus perform a bodily or biological function; if this is the case, an alternative approach to the symptoms is necessary.

Can someone think of something crappiest than that? (well, there's still neuropsychoanalysis...)

Biosemiotics
Biosemiotics is a field of knowledge that has its roots in natural science and philosophy, as well as biology and semiotics, respectively (Hoffmeyer, 2005). Biosemiotics seeks to describe the sign processes that control and form the basis for the development of biological inter-play, between organisms in relation to each other, and physiologically and biochemically in the individual
organism.

Self-referential signs represent the body speaking to itself
Based on biosemiotic and humanities-inspired research into disease, von der Fehr (2008, 2010) describes this other type of indexical signs as self-referential. These are bodily signs that refer to the body itself, in the quality of a biological, experiencing organism.

And I could go on...

Why on earth a semeotician decided one day that they could be of use to explain medical problems is beyond me.

These people are not self-proclaimed gurus, they're academics. (Bærum Fysikalske Institutt, Sandvika, Norway; b Institute of Health and Society, University of Oslo, NO, Oslo) How is this thing happening?

 

[Woolie]

A lot of sociology around this area is much more assumption free. They don't make any stand on what the truth is around causation, they just describe the social phenomena surrounding patienthood - invalidation, the search for meaning, seeking permission to occupy the sick role, etc.

 

[chrisb]

It is hard to avoid the conclusion that, potentially, the most important tool for those advocating a biopsychosocial approach to anything would be a mirror.

 

[Woolie]

Medically unexplained physical symptoms, misunderstood and wrongly treated?
A semiotic perspective on chronic pain

F****adoodledoo!

 

[Trish]

I find it very hard not to wish a bad case of real chronic pain on the arseholes who choose to gaslight us in this way. How quickly they would change their tune.

Copied from the sections @Woolie quoted:

from one-third to half of the physical complaints seen in outpatient clinics are simply medically unexplainable

Medically unexplained is bad enough, but at face value, a statement of fact at the time the patient arrives at the clinic. Medically unexplainable is a whole new level of denial. Is the author God?

 

[large donner]

Is the author God?

Exactly.

Medically unexplainable is a whole new level of denial

Its laughable how the medical profession is currently priding themselves on how many people they are unable to diagnose and not only that they keep wanting to put that figure out everywhere.

Can you imagine Kwik Fit advertising that 30% of their visitors cars remain unfixed!

 

[Valentijn]

I'm hoping the slightly different spelling means its not the same person:

They're listed as being at different universities as well, in different parts of the country.