Metodología y Portafolio

2.6.1 General Literature

The sociological literature on CFS that is not specific to women considers the stigma surrounding the CFS diagnosis (Green, Romei, and Natelson 1999; Looper and Kirmayer 2004), sufferers well-being and quality of life (Schweitzer et al. 1995; Van-Damme et al. 2006; Hardt et al. 2001), the levels of disability experienced by sufferers (Morantz and Torrey 2003; Bombardier and Buchwald 1996), sufferers’ difficulties in securing disability benefits (Hammond 2002; Barbara 1998; Assefi et al. 2003), general practitioners’ perceptions of CFS (Raine et al. 2004), secondary school teachers’ perceptions of CFS (Everett and Fulton 2002), sufferers’ beliefs about their illness (Clements et al. 1997), critical life events immediately prior

Literature Review

to illness (Mayer 2000; Hatcher and House 2003; Blomkvist, Lindh, and Evengard 1999), childhood experiences of illness and parenting in adult sufferers (Fisher and Chalder 2003), caregivers’ experiences (Ferrari and Jason 1997), sufferers’ illness narratives (Bülow and Hydén 2003; Hughes ; Guise, Widdicombe, and McKinlay 2007; Horton-Salway 2001), narrative constructions of the self (Weinberg, Louw, and Schomer 1994) and identity (Horton-Salway 2001; Whitehead 2006; Whitehead 2006).

Although some of these studies present findings that could contribute towards management and treatment, they are not informed by and do not develop a comprehensive understanding of the experience of CFS. Inconsistencies with respect to diagnostic criteria are also prevalent 2.6.2 Sociological literature Specific to Women with CFS

Given the significant levels of disability that CFS produces in women’s lives, and the preponderance of women sufferers, the paucity of sociological literature on CFS and women is striking.

In a cross-sectional study of 40 adolescents Van de Putte, Doornen et al. (2006) claim to show that the mothers of adolescents with CFS exhibit similar psychological symptoms. They conclude that “the clustering of symptoms in mother and child suggests genetic transfer and gene-environment interaction” (van-de-Putte et al. 2006, p.2078). This study has not been repeated and these conclusions are not directly supported by any other research.

Jha, Massen and Lindow (1999) suggest that fatigue in women with CFS may improve during the third trimester of pregnancy and puerperium. These conclusions are based on what is probably the only study of severe CFS and pregnancy and involves the experience of one participant. Schacterle and Komaroff have compared pregnancies in women with milder CFS before and after illness onset and conclude “pregnancy did not consistently worsen the symptoms of CFS. Most maternal and infant outcomes were not systematically worse in pregnancies occurring after the onset of CFS” (2004, p.401). This study has not been repeated.

Åsbring and Närvänen (2002) have investigated the experiences of stigmatisation and discrimination reported by women with CFS. According to participants most of this stigmatisation occurs due to the controversy surrounding the CFS diagnosis in response to the breadth of symptoms they present. Åsbring and Närvänen (2002) describe how women negotiate these experiences of stigma. This study highlights the importance of clarifying the diagnostic criteria for CFS. This may reduce the controversy surrounding the diagnosis and make the syndrome, and its experience, more communicable.

Reynolds and Vivat (2006) have assessed the use of art therapy for women with CFS. They suggest that although art therapy is not a curative therapy it may allow “those who live with

Sociological Literature serious illness to unfold the cramped self, uncover losses and strengths, and gain the courage to begin a process of reclamation of story and life” (Ferris and Stein 2002, p.47 in Reynolds and Vivat 2006, p.444).

An isolated qualitative case study has been conducted on the experiences of two women who received treatment with the immunomodulatory drug Ampligen. Treatment is reported to have created a remission of CFS symptoms. This study has not been repeated.

Teven (2004) examines the contextually embedded narratives of self and enigmatic illness presented by women with fibromyalgia and CFS. Teven is focused on fibromyalgia, however, her doctoral thesis provides some insight into CFS.

Using grounded theory, McCue (2004) has examined the experiences of women who have recovered from CFS with respect to their experiences of receiving a diagnosis. McCue writes:

In conclusion, the findings of this study show that those with CFS experience problems with diagnosis in terms of organic versus a mental health approach, and with acceptance and belief that they are actually ill, which appear to be challenges that are unique to CFS although this also applies to some extent to illnesses that are categorised as functional somatic syndromes. (McCue 2004, p.200)

This is the only study identified that considers the experiences of women who have recovered from CFS. The focus of the research is purely concerned with women’s experiences of diagnosis. Richman, Jason et al. (2000) analyse the gender biases that underlie the social construction of chronic illness states, exploring CFS as an example of these processes. They claim that the tendency within the literature to focus on CFS as a female illness caused by psychiatric and psychosocial factors detracts from efforts to examine the disorder at a biomedical level. The authors argue that the failure to find a viral etiology for CFS has led to an illness construction in the biomedical literature that is similar to that which initially surrounded multiple sclerosis: a disease initially considered to be a form of neurosis specific to women. Despite this caution against characterising CFS as simply “all in the mind”, this tendency continues to pervade research. Caplan (2001), herself a researcher in the area of psychology, has given a phenomenalogical account of her own experiences of CFS and multiple chemical sensitivities. Caplan comments:

Until now, I have not written about the misinterpretation of real physical problems, especially in women, as psychological … and psychopathological. Without my knowing it, for many years the latter was exactly what was happening to me. Perhaps most disturbingly, I, too, misinterpreted physiologically-based problems as psychological because of my lack of knowledge first about the very existence and later about the nature of what is now variously called Chronic Fatigue Syndrome, Chronic Fatigue Immune Dysfunction Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, and various other things outside North America. (Caplan 2001)

Literature Review

Caplan (2001) identifies a genuine problem, one that clearly impacts upon the diagnostic process for women with CFS.

Clarke (1999) has compared the experiences of men and women in seeking a diagnosis. The evidence in this paper then points to a clear dichotomy between the similar ways that men and women experience the disease and the differences in the ways that they are treated by the medical profession. This analysis adds weight to the hypothesis that explains gender differences in illness as the result of medical views of the psycho-pathological nature of women and their bodies, and their proclivity to seeing women’s problems as psychogenic. (Clarke 1999, p.132).

Richman and Jason (1998) make a similar observation in their study of the differences between the opinions of sufferers and the medical community.

Within the context of a social construction of illness perspective, we have suggested that the medical community has devoted major attention to the presumption that CFS is largely rooted in psychiatric and/or social stress factors, while the CFS patient population has maintained that CFS is primarily an illness with a yet to be identified biomedical etiology. (Richman and Jason 1998, p.24)

These studies concerning diagnosis demonstrate the importance of clarity with respect to the diagnostic criteria. Whether gender bias is occurring with respect to any aspect of the syndrome is difficult to assess, however, without a comprehensive assessment of what the experience of CFS involves.

What Richman and Jason (1998), Clarke (1999), Caplin (2001), Richman, Jason et al. (2000) and McCue (2004) tend to overlook, however, is the assumption that the condition can or should be ascribed to either a somatic or psychogenic etiology. They are not alone in this assumption which can be found throughout the more general sociological literature on CFS (Banks and Prior 2001; Cooper 1997; Stein 2001; Ware 1992).

The sociological studies of CFS presently available do not substantially clarify what social factors may contribute to or exacerbate the occurrence of CFS. They do not provide a comprehensive assessment of how the disorder is received socially or how this may impact on CFS sufferers’ experience of illness. Similar to the literature considered in earlier sections of this review, the sociological studies considered use a variety of diagnostic criteria, tend to focus on an isolated aspect of the CFS experience and are ill-informed of the overall CFS experience, particularly for women. Some of these studies may contribute towards management and treatment programs, particularly how such programs might best be presented and offered.

2.7 The New Zealand Context

Little research has been undertaken on CFS in New Zealand. The studies of Vallings (1989, 1993), Murdoch (1987, 1989, 1989, 1992), Blakely, Howard et al. (1991) and Levine, Snow et

The New Zealand Context al. (1997) are the main published investigations available on CFS in the New Zealand population. The diagnostic criteria these authors enlist are not consistent and their research has not been repeated.

Murdoch’s work is the principle source from a medical perspective. In 1984 Murdoch established that of 109 members of the Otago/Southland M.E./CFS Support Group of New Zealand “72 percent had severe to moderate problems at work (many lost their jobs), 40 percent had severe to moderate domestic problems and 28 percent had financial problems” as a result of their illness (Murdoch 1987, p.53). Based on a random sample of New Zealand general practices, Murdoch concluded that approximately 74% of CFS sufferers in New Zealand are women between 20 and 50 years of age (Murdoch 1987, p.53). A study of the greater Dunedin area showed “the prevalence [of CFS to be] at least... 127 per 100,000. Thus this syndrome has about the same prevalence as Parkinson’s disease and is more prevalent than multiple sclerosis” (Murdoch 1987, p.53).

In New Zealand, CFS has occurred in geographically specific epidemics (Levine et al. 1997) but most often occurs on a sporadic basis throughout the community. In a ten year follow up study of the 1984 outbreak of CFS in the West Otago area, Levine, Snow et al. (1997) report female sex to be a risk factor for CFS and suggest that early recognition and diagnosis of CFS by physicians contributes towards a higher rate of recovery. The authors do not examine the reasons why early diagnosis is useful or why female sex is a risk factor.

Vallings (1989, 1993) has evaluated the efficacy of group therapy, hormonal treatment and the use of alternative medicine, claiming that group therapy, complete rest and gradual exercise build-up were most successful. Her five year study of 200 patients (Vallings 1989) and 10 year study of 500 patients (Vallings 1993) identified depression (often due to the considerable reduction in expectations regarding possible achievement in work, study, sporting commitments, etc.) and symptoms suggestive of anorexia nervosa as important contributing factors to CFS, particularly in women. This study has not been repeated and these findings do not support the hypothesis that CFS is a form of depression or anorexia nervosa but they do suggest that these factors may need to be addressed by management and treatment programs.

Blakely, Howard et al. (1991) have compared CFS to chronic pain and suggested that CFS could be considered a subclass of chronic pain. This isolated study has not been repeated.

Scott’s (1993) Masters thesis on the use of selenium in treating CFS; an unauthored working paper entitled ME : Sickness, Stigma and Self (V.U.W. Sociology Dept date unknown), Horne’s (1990) Masters thesis, The Social and Psychological Effects of ME in New Zealand and the Problems of Recognition, which offers a Maori perspective; and Anne M. Ny’s (1987)

Literature Review

unpublished paper, A Study of the Medical, Social, and Economic Implications of the “Illness” for 100 Sufferers in Canterbury, New Zealand, all point towards the need for a systematic phenomenological analysis of New Zealand women’s experiences of CFS. They do not give reasons for this suggestion. Like the published research above, these studies do not use consistent diagnostic criteria and have not been repeated.

Within New Zealand, CFS has attracted considerable controversial media coverage. Information is available from ME support groups (M.E. Action Campaign 1993) throughout the country and there are a number of self-help books by New Zealand authors, such as Steincamp’s (1988) Overload and Jeffreys’ (1982) The Mile High Staircase. Vayda’s (1991) Chronic Fatigue offers self-help advice from an Australian perspective. Such publications have become popular worldwide by offering advice to sufferers and, in some cases, recounting the author’s own experiences of CFS. The medical community in particular have found these accounts inadequate for a variety of reasons7. The self-help literature does not represent a systematic review of sufferers’ experiences of the disorder. Media coverage has been sporadic and selective.

The inconsistencies within the New Zealand research reflect those consistent within the broader research community. Although Murdoch’s work provides an approximate estimate of the female prevalence of CFS, this has not been substantiated and the reasons for this preponderance have not been examined. Diagnostic criteria used in these studies vary which makes comparison difficult. Existing research has not been verified and the diagnosis continues to attract controversy within the media, general practice and the research community generally.

2.8 Conclusion

The literature considered here provides a broad view of the research on CFS. This is necessary background for a comprehensive exploration of the condition. The review reveals three common themes within the research: the lack of clear diagnostic criteria, a propensity to analyse CFS from the perspective of disciplines, the boundaries of which tend to assume a dichotomy of mind from body, and a lack of a comprehensive phenomenological understanding of CFS.

The lack of uncontroversial and well-established diagnostic criteria systematically undermines the progress of research. Present studies are largely irreconcilable because research has been implemented on the basis of varied and unclear diagnostic criteria. This makes the verification of results untenable. What these studies do offer, consequently, has not begun to

7_{Murdoch refers to one such book as an “intriguing piece of science fiction [which] holds within it more than a grain of truth, but} while time discovers that truth, there will continue to be controversy about both syndrome and treatment” (Murdoch 1989, p.213).

Conclusion accrue into a comprehensive composite picture of CFS. This is compounded by the propensity of studies to consider specific and limited aspects of the syndrome.

The literature reviewed does suggest that CFS cannot simply be considered a psychiatric or psychological disorder, although there is significant co-morbidity between CFS and various psychiatric and psychological disorders.

The biomedical literature shows some promise in establishing specific somatic aspects of the disorder, in particular, that certain brain regions are in some way implicated in the condition. These findings need to be accurately reflected in the diagnostic criteria, further research and integrated into management and treatment programs.

None of these literatures are informed by a comprehensive understanding of the experience of CFS, particularly for women. Where a phenomenological approach has been employed, such as within the sociological literature, the research tends to focus on an isolated aspect of the experience of CFS. This does not provide a comprehensive overview of sufferers’ experiences. Such phenomenological studies are limited in their ability to inform further research.

I suggest that a more comprehensive understanding of the phenomenality of CFS could significantly aid future research. Clarity with respect to the nature of the disorder would potentially lead to a clearer understanding of its diagnostic criteria. This would fascilitate progress in other areas of research, particularly etiological studies and the development of management and treatment strategies.

Where the medical and psychiatric literature tends to reduce the problem of CFS to the somatic, psychology, psychosomatic medicine and psychotherapy tend to reduce CFS to the psyche. Consequently, these literatures are prone to reinstating a mind/body dichotomy that perpetuates disciplinary biases and boundaries. This makes a more comprehensive or interdisciplinary approach to CFS difficult. The pervasive assumption is that the condition can or should be ascribed to either a somatic or psychogenic etiology and that when this debate is settled it will resolve much of the controversy that surrounds the condition.

That it is possible to reduce this syndrome to either somatogenic or psychogenic origin I believe is an open question. Perhaps, instead, it is the duality of mind and body that is the problem. Given the evidence, I would suggest a comprehensive phenomenological investigation that does not assume this dichotomy stands to more accurately characterise the condition. This could provide a firmer platform for further research.

Conducting phenomenological research that avoids the mind/body dichotomy poses several challenges.

Literature Review

Clarifying what the experience of CFS is will require a hermeneutic process whereby the phenomenological data informs the third-person studies and vice versa. It would be prudent, therefore, for any phenomenological or biomedical study of the condition to be open to such a hermeneutic process. Given the somatic and psychological breadth of the experience this hermeneutic process will necessarily be a broadly interdisciplinary one.

Further, I suggest this review shows that existing research suffers from limited conceptual frameworks for the possibilities of relationship between psyche and soma. This conceptual limitation considerably contributes to the fragmentation of the view of the experience. It tends to focus approaches to the problem on only one side of the mind/body dichotomy. The pervasive assumption within psychosomatic medicine, for instance, that somatisation is necessarily pathological and the tendency within psychology and psychotherapy to psychologise CFS are predominant examples of such limited conceptual frameworks at work. Both result in an absence of understanding with respect to the bodily contributions to the experience. In contrast, studies that show the most promise in attending to the management and treatment of the disorder appear to be conducted from an interdisciplinary and multidimentional perspective and attend to both mind and body. How these studies better succeed is not clear. They provide limited insight into the overall experience but they do point towards the need to adequately tackle contributions from both soma and psyche. This research endeavours to enlist conceptual tools that more adequately attend to the relationship between mind and body.

To begin to address these lacunae the present research aims to provide a comprehensive phenomenological examination of thirty New Zealand women’s experiences of CFS, one that is open to a hermeneutic process of exchange with third-person research, and, therefore, allows for interdisciplinary engagement. Such a comprehensive examination will need to attend to the different stages of the illness experience, including recovery, and stands to contribute to a clarification of the diagnostic criteria for CFS and to potentially guide treatment and management approaches, particularly those which are multidimensional or multidisciplinary. The present research aims to attend to the ‘psychosomatic’ complexity of CFS in a manner that is not reductive. Rather, the research will need to enlist a conceptual framework for the interdependence of psyche and soma that does not limit understanding of this exchange to pathology.

Introduction

3. The Problematic

3.1 Introduction

To consider the phenomenality of CFS is to consider (a) a form of suffering, (b) an illness process and (c) a psychosomatic phenomena. This chapter introduces each of these problematics.