"United We Stand": Framing Myalgic Encephalomyelitis in a Virtual Symbolic Community-Lian/Nettleton

[Dolphin]

http://qhr.sagepub.com/content/early/2014/12/08/1049732314562893.long

"United We Stand": Framing Myalgic Encephalomyelitis in a Virtual Symbolic Community.
Qual Health Res. 2014 Dec 8. pii: 1049732314562893. [Epub ahead of print]
Lian OS1, Nettleton S2.

• 1University of Tromsø-The Arctic University of Norway, Tromsø, Norway olaug.lian@uit.no.
• 2University of Tromsø-The Arctic University of Norway, Tromsø, Norway University of York, York, United Kingdom.

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.

© The Author(s) 2014.

KEYWORDS:
chronic illness; discourse analysis; fatigue / exhaustion; health care users’ experiences; internet communication; knowledge construction; lay concepts and practices; power / empowerment; social construction of illness and disease

PMID:

25488934

[PubMed - as supplied by publisher]

 

[Dolphin]

This isn't as biased as some pieces which assume CBT and GET are wonderful and that patients forums, patients organisations, etc. should be recommending them.

However, I don't think it is balanced.

This is an example of how I think it is unbalanced:

By limiting the parameters for acceptable speech, the community runs the risk of making negotiations within and beyond the community less of a democratic debate and more of a highly charged politicized battle with each “camp” becoming increasingly entrenched. Their vociferousness might ignite public support, but in the context of Western medicine, where the biomedical ideology remains so dominant and the imperative for diagnostic clarity so strong, this seems to us to be unlikely (so as long as a somatic cause and cure are not found). If the community ends up being prescriptive, constraining, restraining, and oppositional, it may silence and delimit discourses, and thereby disempower rather than empower the patient vis-à-vis the medical system.

 

[Dolphin]

Here's how it ends:

As for the role of the ME VSC in a wider social health movement, the question is to what extent it can facilitate and/or constrain the medical approval and social legitimacy of a medically contested condition. Paradoxically, the community has a disempowering potential that relates to the very mechanisms that creates and maintains it. For a community to exist, it has to demarcate its borders, as cultures are most readily defined through contrastive mechanisms. If a community is criticized or threatened from outside, the need to draw borders is strengthened, and the members start redefining themselves in relation to other groups. In the ME VSC, the demarcation between the speakable and the unspeakable is established through interactions coalescing in response to what they perceive as a threat from outside. That “threat” is a medical community that explains ME in a way that portrays it as “imaginary,” and therefore treats ME patients in an insulting, disrespectful, stigmatizing, unhelpful, and even harmful manner. The border constitutes a kind of necessary membrane around the community, but if it does not allow diffusion in and out of its surroundings, the community might end up being no more than oppositional. Through its own internal dynamics, then, the community might lose some of its potential for becoming politically influential.

I'm not sure it has proven that the forum has lost some of its potential for becoming politically influential.

 

[Dolphin]

During the period of analysis, we did not find any examples of people presenting positive experiences with health professionals and health services on our chosen sites.

This seems to be an unusual ME/CFS forum (or alternatively they analysed it in an unusual way).

 

[Dolphin]

I saw one person on FB summarised it as follows:

There are also comments on EMEA and British ME organisations in the article. My summary of the article: ME Patients feel misunderstood by the doctors. Therefore, they form a virtual community to support and empower each other, they construct an idea of what their disease is like (funny enough, the same idea as in the WHO ICD-10 diagnostic guidelines) but they ought to be more open to other ideas (such as psychological reasons) for doctors and researchers to feel more comfortable around them. Do you read the article the same way? Let's hear

 

[Dolphin]

This is a long paragraph which explains some of the views of the authors. It also includes some (IMHO) interesting findings from other research

The raison d’être of the VSC is to combat psychogenic understandings of ME. This is typical for many groups who experience medically unexplained conditions (Aronowitz, 1998). According to Aronowitz, etiological controversies surrounding these conditions are largely about how we distribute blame and responsibility, and especially whether and to what degree people themselves are held responsible for their illness. Underlying these controversies is a psyche-soma dichotomy and monocausal explanatory models, assumptions that are often activated in discussions about conditions that are medically difficult to identify, explain, and cure. This seems to be the case also for people experiencing unexplained long-term fatigue, who often feel misinterpreted, psychologized, and stigmatized by doctors (Aronowitz, 1998; Åsbring & Narvanen, 2002; Moss & Dyck, 2002). According to a recent review of 34 qualitative studies in relation to ME/chronic fatigue syndrome (CFS), patients sometimes feel that doctors also question their moral character and doubt the reality of their symptoms (Anderson, Jason, Hlavaty, Porter, & Cudia, 2012). Women, who seem to be particularly exposed, report “being told over and over again that there was no disease, and ‘it is only in your head’” (Moss & Dyck, 2002, p. 89). They sometimes describe the lack of acknowledgment as more problematic than the illness itself. Anderson et al. (2012) also found evidence that doctors do feel negatively about ME patients (believing that they often exaggerate the severity of their symptoms), and that they are skeptical about ME as a clinical diagnosis and as a disease. This situation arises because their illness belongs to a group of “conditions that escape the reality principle by apparently existing only in terms of subjective experience” (Cohn, 1999, p. 195), and as a result fails to secure the authoritative stamp of medical approval and associated social legitimacy (Jutel, 2011). Ill bodies are generally made culturally intelligible and culturally legitimate through diagnostic labels (Moss & Dyck, 2002), but ME patients “tend to feel labeled rather than receiving a legitimized diagnosis” (Anderson et al., 2012, p. 7). The core narrative thrust evidence in the Norwegian ME VSC therefore resonates with these wider debates, and so the online activity both echoes and sustains these enduring conflicts and concerns.

 

[Snowdrop]

Seems like a good example of how context guides interpretation. They seem sincere but without really spending a lot of time and effort coming to grips with what we deal with 24/7 year in year out and all the nuances of coping with the range of illness, they can't adequately assess the meaning or utility of what is being shared.

 

[A.B.]

The authors don't seem to understand that research actually supports the position of patients that this is an organic illness. It is the psychosomatic explanation that is without any basis in objective reality.

That we can't explain how the universe came to be doesn't mean that belief in a creator is the only rational position.

 

[deleder2k]

For those who read it: What do you think about the moral/ethical aspect of the study? They didn't bother to contact their informants for approval. They included a 16 year old, without consent. OK?

 

[Dolphin]

For those who read it: What do you think about the moral/ethical aspect of the study? They didn't bother to contact their informants for approval. They included a 16 year old, without consent. OK?

Don't know. If it was a private forum I think it would be more serious: they said this was information anybody could see.

 

[deleder2k]

Very personal experiences from a child with a BMI on 13.7 wanted to be fed with a tube on a hospital. Is it okey? I know several people that reacted to it. One guy at a Norwegian forum found her name using less than 60 seconds on Google. Why not contact her, and the others? Most of them were from Facebook. They said it was probably hard contacting their informants. It is probably just as easy as calling someone...

 

[Sean]

Meh.

(The article, not comments here about it.)

 

[Esther12]

For those who read it: What do you think about the moral/ethical aspect of the study? They didn't bother to contact their informants for approval. They included a 16 year old, without consent. OK?

For a lot of things like this, it does seem a bit morally iffy to me.

For people who have been cut off from a lot of systems of social support, open forums are a really valuable way of being able to reach out to others who one might hope will understand ones situation. Turning that in to a place where researchers can pick up quotes without consent in order to do a cheap bit of research might leave some feeling more isolated and less able to reach out and discuss their own experiences.

Also, I'm a bit uncomfortable with this sort of 'studying' without the researchers engaging the posters in some sort of open debate and discussion about the interpretations that the researchers are placing on the posters quotes and actions. Without that it's just a one-way thing imposed upon patients. For researchers, they have conferences funded, chances to socialise with colleagues, private lists they'll be aware of... a lot of patients don't have these sorts of opportunities to discuss matters important to them in venues where they are not at risk of being studied without consent.