Some sociology articles about Patient groups and Health movements (mentions CFS))

[Snow Leopard]

First up:

Patient groups and health movements, by Stephen Epstein (2005)
(From: New Handbook of Science and Technology Studies)
Article has no abstract and says no citation without permission, but it describes the varying success of patient groups influencing scientific research, it mentions CFS. It also mentions future directions for sociologists studying this field.
http://www.faculty.umb.edu/pjt/epi/epstein05.pdf

Second:
Illnesses you have to fight to get: facts as forces in uncertain, emergent illnesses, by Dumit J (2005)

Chronic fatigue syndrome and multiple chemical sensitivity are two clusters of illnesses that are pervaded by medical, social and political uncertainty. This article examines how facts are talked about and experienced in struggles over these emergent, contested illnesses in the US. Based principally on a large archive of internet newsgroup postings, and also on fieldwork and on published debates, it finds that (1) sufferers describe their experiences of being denied healthcare and legitimacy through bureaucratic categories of exclusion as dependent upon their lack of biological facts; (2) institutions manage these exclusions rhetorically through exploiting the open-endedness of science to deny efficacy to new facts; (3) collective patient action responds by archiving the systematic nature of these exclusions and developing counter-tactics. The result is the maintenance of these very expensive struggles for all involved.

The resultant discussions form the basis of constant experimentation with strategies, tactics, identities, and relationships, as well as with the expected alternative therapies, referrals, and emotional support. The persistence of uncertain and contested illnesses like CFS and MCS as ‘emergent’ must be understood negatively as the continued existence of suffering that is not being treated, and positively as the ability of sufferers to creatively survive within the cracks of institutions arrayed against
them.

https://www.ncbi.nlm.nih.gov/pubmed/16085344
10.1016/j.socscimed.2005.06.018

Third:
Illness movements and the medical classification of pain and fatigue. by Deborah Barrett

Communities of suffering share a common interest in moving their illnesses onto the public
health agenda; however, they may employ different methods and strategies to achieve this
goal. Sociologist Deborah Barrett compares the process of emergence of two illnesses,
chronic fatigue syndrome (CFS) and fibromyalgia...

From: Emerging Illnesses and Society: Negotiating the Public Health Agenda, edited by Randall M. Packard
(Google Books)

Fourth:
Faire exister une maladie controversée : Les associations de malades du syndrome de fatigue chronique et Internet by Marc Loriol (2003) (I haven't read this one)
https://www.researchgate.net/public..._du_syndrome_de_fatigue_chronique_et_Internet


Fifth:
The classification and nomenclature of ‘medically unexplained symptoms’: Conflict, performativity and critique

Persistent medically unexplained symptoms (MUS) – including the many syndromes that fall under this umbrella – involve a discrepancy between professional knowledge and lay experience and are often associated with latent or explicit dynamics of conflict. Although this conflictual dimension has been amply documented, little critical attention has been paid to how nomenclature and classification feed into the conflictual dynamic and are informed by it in turn. In this paper I engage with this question from a social-theoretical perspective informed by the concept of performativity. The paper offers a critical review of debates around the medical terminology in use, and a discussion of the alternative terminology developed by social scientists. Based on these, I argue that medical and social scientific discourse unwittingly collude in a disavowal of the psychological dimension of ‘MUS’. I then discuss the paradoxical character of this disavowal and suggest that it tends to perpetuate polemical modes of engagement around ‘MUS’. I conclude with suggestions on how further research might counteract this tendency.

http://www.sciencedirect.com/science/article/pii/S0277953612006739
10.1016/j.socscimed.2012.09.010

Sixth:
The politics of health mobilization in the United States: The promise and pitfalls of “disease constituencies”
by Steven Epstein

A critical review of recent literature on U.S. social movements concerned with matters of health and illness prompts reconsideration of the prevailing conception of such movements as necessarily isolated and particularistic. With a focus on disease-constituency-based mobilization—presently the most potent model of efficacious activism to be found in the domain of health and illness in the United States—I argue that such activism may tend in two directions: a specific response to an imminent disease threat, and a bridging of collective action frames and identities that can lead to connections across differences and broader mobilization. Case studies have demonstrated how patient activism has affected the management of illness, attitudes and practices of health professionals, research practices, processes of innovation, state policies, and corporate behavior. Through close analysis of patient group mobilization and its distinctive orientation toward knowledge and expertise, I argue that patient groups in practice may connect with or influence one another or a range of other forms of mobilization in relation to health, and I examine the “linkage mechanisms”—spillover, coalition, and frame amplification—by which this can occur. Rather than imagine a stark opposition between particularistic, single-issue health politics, on the one hand, and universalistic efforts to transform the meaning and practice of health and health care in the United States, on the other, I propose closer attention to the potentially Janus-faced character of many health movement organizations and the ways in which they may look either inward or outward.

http://www.sciencedirect.com/science/article/pii/S0277953616300491
10.1016/j.socscimed.2016.01.048

Seventh:

Illnesses as Interests: The Rise of Disease Advocacy and the Politics of Medical Research By Rachel Kahn Best (thesis)

In the past 30 years, people with serious diseases have organized politically to an
unprecedented degree. They founded hundreds of nonprofits, launched fundraising
drives, publicized ribbons and walks, and lobbied Congress for funding for research into
their conditions. In the first longitudinal study of the field of disease social movements,
this dissertation asks why disease advocacy expanded so quickly and how it changed the
politics of medical research funding.

http://digitalassets.lib.berkeley.edu/etd/ucb/text/Best_berkeley_0028E_12418.pdf

 

[Snow Leopard]

The ‘ME Bandwagon’ and other labels: Constructing the genuine case in talk about a controversial illness
Mary Horton-Salway 2007

Abstract
This paper examines the discourse of morality surrounding ‘ME’ as a contested illness, looking at how GPs and ME group members differentiate between the category of ‘genuine ME sufferer’ and the ‘bandwagon’. ‘Jumping on the bandwagon’ is a metaphor commonly used to describe the activity of ‘following the crowd’ in order to gain an advantage. This discursive analysis shows how ‘bandwagon’ categories are constructed in contrast to the category of genuine sufferer. People who jump on the bandwagon are accused of matching their symptoms to media stereotypes, adopting trendy illnesses (‘fads’,) or using ‘tickets’ to avoid facing up to psychological illnesses. Both GPs and ME group members construct a differential moral ordering of physical and psychological illness categories, where the latter assumes a lesser status. The paper concludes that against a background of medical uncertainty and controversy, the ‘bandwagon’ and other derogatory labels function as contrast categories that work to establish the existence of ‘ME’ as a genuine illness.

http://onlinelibrary.wiley.com/doi/10.1348/014466607X173456/abstract

 

[Snow Leopard]

It is interesting how sociologists tend to project their own lenses onto patients, some expecting patients to be especially concerned about the identity of being a "mental" or "physically" ill patient, or have a strong philosophical position on the duality of mind and body. I think it would be interesting to do empirical sociological studies of sociologists themselves.

Anyway, most of them haven't seem to have bothered to ask why patients may be resistant to psychological explanations and build a testable model. A key fact they seem to fail consider is that psychological treatments simply don't work for many patients. In the wider community, criticism of medically ineffective treatments ("alternative medicine") is often considered admirable, yet when patients criticise psychological approaches as being ineffective (the evidence is equally as weak as for alternative medicine: unblinded trials relying on subjective outcome measures), suddenly it's the patients motives that are questioned.