Generating a Social Movement Online Community through an Online Discourse: The Case of ME

[Dolphin]

ME is a medical diagnosis interesting in itself, but it is also interesting as a topical case of a medically unexplained low-status contested chronic condition. These conditions often have a lot in common: the disease cannot be confirmed by technological tests, the border between somatic and psychiatric disorders is in dispute, and/or problem is systemic and cannot be localized in a particular body part. Such conditions have low prestige among doctors (Album and Westin 2008). Bodily problems that are neither identified by biomarkers nor explained theoretically are often constructed as psychogenic in origin. In our society, where less physical means less real (Jutel 2011, 13), these conditions usually become contested, both within and between medical and lay entities. This contest reflects an important underlying issue: patients seek acceptance for having an actually existing disease and thus having permission to be ill (Aronowitz 1998; Nettleton 2006). As a chronic contested condition, ME belongs to a group of conditions that escape the reality principle by apparently existing only in terms of subjective experience^ (Cohn 1999, 195). A recent review of thirty-four qualitative studies about the experiences of patients and doctors in relation to ME/CFS shows that patients often feel that doctors call their moral character into question, while doubting the reality of their symptoms. Sometimes, they describe the lack of acknowledgement and understanding as even worse than the illness itself (Anderson et al. 2012).

 

[Dolphin]

The education of B is also an education of the reader; as such the text resembles a Socratic dialogue. The reader is allowed to scoff at the ignorance of B, while simultaneously receiving answers to B’s questions. These are conventional questions about ME, likely to have been posed by many healthcare workers, family members, friends, acquaintances, and so on, of members of the Facebook group where it was originally posted. The claims made and questions posed might be paraphrased like this (quotes from T1 in brackets):

– ME is related to some form of vague systemic imbalance ("the whole system, everything’s connected, right?")

– ME is primarily psychogenic in its origin ("I have a psyche, sure, don’t you?")

– ME is unlike other somatic illnesses in that it is not purely physical ("But doctors, they don’t think about the whole picture, do they?")

– ME can be cured by lifestyle changes ("Are you good at getting out for walks?")

– ME can be cured by quick-fix treatment programs, as demonstrated by anecdotal evidence ("She went to one of those lightning processes and was all better.")

– ME is not a distinct disease, because fatigue and pain are common symptoms for different conditions ("But not everyone with pain has ME")

– ME sufferers are whiners ("it’s been almost ten years; my doctor thought it was time for a broad screening")

 

[Gijs]

This clownish article has a contemptuous tone.

 

[Dolphin]

By writing and posting text and images on websites open to public debate, people suffering from ME in Norway create and sustain a social movement online community. The textual representations of this community, of which we have given two examples, exhibit considerable symbolic complexity regarding both form (style, tropes, and devices) and explicit content. However, they convey the same main messages. Through their explicit and implicit arguments, they reveal adherence to a shared definition of the situation: health professionals who explain ME as triggered by psychogenic factors are out of touch with "reality" by failing to see the "true" somatic origin of this disease. The psychogenic way of understanding ME is not only wrong but also stupid. Health professionals who think otherwise are mistaken or as hinted to in T2, suffering from "delusions, lack of empathy and selective loss of hearing and vision, affecting in particular the ability to read and take in bio-medical research literature."

 

[Dolphin]

This clownish article has a contemptuous tone.

I didn't pick up a contemptuous tone from reading the whole thing.
I have also read other papers by these authors which were sympathetic.

 

[Dolphin]

Both texts function as a way of exercising counter-power (Foucault 1980) – to contest (as with T1) or to appropriate and subvert (as with T2) the language of medical power.

 

[Dolphin]

Within this schism, both authors write from a confident authoritative position while using superiority humour containing mockery, disdain and making fun of others’ inadequacies. Through their satiric writing, they mock health professionals who support a psychogenic view of ME. Their message reads: as community members, we are strong people who ought to stand up, as a group, to fight against powerful doctors and others who present this view. This we-and-they schism is connected to the basic structure of the plot in their story, which is a classical hero-and-villain structure.

 

[Dolphin]

The satiric attacks on the medical profession seen in our two texts must be understood in relation to the stigma, disbelief and powerlessness associated with the lack of a clear and undisputed medical diagnosis.

 

[Dolphin]

Together with other texts with similar views and messages, our examples contribute to the institutionalization of a social structure with shared norms and values that foster cooperation, solidarity, loyalty, support, collective identity and a feeling of belonging. In short, it leads to the creation of a social structure that qualifies as a community that enables them to stand shoulder by shoulder for a common cause: to transform doctor’s perceptions of ME from psychogenic to somatic explanatory models. This seems to be the raison d’etre of their community.

 

[Dolphin]

Our two texts amount to a tiny piece of a large community, which again is only a small part of an international social health movement. Yet, they contain all the main elements a social movement contains: informal networking, collective action, collective identity and a conflict with identified opponents. Our study is therefore a study of a social mobilization in miniature.