Education And Debate

Professional and popular views of chronic fatigue syndrome

BMJ 1994; 308 doi: http://dx.doi.org/10.1136/bmj.308.6931.776 (Published 19 March 1994) Cite this as: BMJ 1994;308:776
  1. G MacLean,
  2. S Wessely
  1. Academic Department of Psychological Medicine, King's College School of Medicine and Dentistry, Denmark Hill, London SE5 9RS
  1. Correspondence to: Dr Wessely

    abstract

    Objective : To study the coverage of the chronic fatigue syndrome in the popular and professional press.

    Design : Search of all original research papers on the chronic fatigue syndrome published in British journals from 1980 onwards and of professional trade papers, national newspapers, and women's magazines. Interviews with six medical journalists.

    Setting : British scientific, medical, and popular press.

    Results : 37 (49%) articles in research journals did not favour organic causes and 23 (31%) favoured organic causes. By contrast 31 (55%) articles in the medical trade press and 118 (69%) in national newspapers and women's magazines favoured organic causes.

    Conclusions : Press coverage of chronic fatigue syndrome has amplified and distorted divisions in the research community concerning the chronic fatigue syndrome. Articles in the press concentrate on a simple medical model of illness reinforcing the stigma of psychological illness and dissatisfaction with traditional medical authority.

    Introduction

    During the past decade the attention given to the chronic fatigue syndrome by the professional and popular press has risen enomously producing a media epidemic.1 We had the impression that coverage is different in peer reviewed literature and the popular press, and even within sections of the popular press. Even the names given to the condition are different: myalgic encephalomyelitis is used by the media, but the scientific press prefers the chronic fatigue syndrome, which is more neutral. We examined media and professional representations of the subject in the United Kingdom.

    Methods

    We identified all scientific papers on the chronic fatigue syndrome published in the United Kingdom from 1980 by a systematic search of MEDLINE, Current Contents (from 1986), the British Library Abstracting Service, and hand searching key journals. To be included a paper had to be published in a British journal, contain original data, and be a full paper (not an abstract or letter). These papers were thus the main source of scientific material available to British news journalists, although not their only source.

    Classification of articles on chronic fatigue syndrome published in Britishjournals and magazines since 1980. Figures are numbers (percentages) of articles

    View this table:

    We then searched for articles on the same subject appearing in the professional trade journals (Hospital Doctor, Pulse, etc), national newspapers, and women's magazines over the same period. The articles were obtained from the archives of the British National Newspaper Library, Colindale, press cutting agencies, and our own files. Two journalists provided searches of their own newspapers. For inclusion all articles had to be primarily concerned with chronic fatigue syndromes.

    Our survey was extensive but not comprehensive. For example, we were unable to systematically search the Daily Express, because no index was available. We also did not cover any local newspapers. Most of the gaps were probably in women's magazines. We attempted to monitor the leading titles and used the press reports provided in the self help literature. Although our coverage is not complete, we do not believe any systematic bias was introduced.

    Each research paper was classified according to the nature of the conclusions reached. Papers that claimed to have found important organic abnormalities (such as evidence of immune dysfunction or viral persistence) or had not found evidence of substantial psychosocial dysfunction were classified as favouring organic causes. Those that failed to find evidence of organic dysfunction or provided evidence of a significant role for psychosocial factors were classified as not favouring organic causes. In uncertain cases (such as papers relating to neuropsychology) we rated the authors' conclusions and not our interpretation of the data. Unclassified papers were either methodological (introducing rating scales) or covered areas that could not be classified by this distinction (such as papers on sleep quality). We accept that this division is arbitrary and artificial.2 We restricted our study to British journals and articles because, although American journals are easily obtained, we could not survey an extensive range of other publications.

    We classified articles in the press by a similar system. The division was easy to make because most articles were unambiguous. Finally, one of us (GM) approached 11 well known medical journalists working for national papers to ascertain their own views on the subject. Six were willing to be interviewed. We asked about their knowledge and experience of medical reporting in general and the chronic fatigue syndrome in particular.

    Results and discussion

    The table presents the results of the classification. Most research papers did not favour organic causes. By contrast articles in all three sections of the press surveyed were more likely to favour organic causes. The ratio of organic to non-organic opinions increased with increasing distance from the medical community.

    The chronic fatigue syndrome provides an excellent opportunity to study the relation between professional and popular coverage of controversial medical subjects. There is no established aetiology for the chronic fatigue syndrome, no medical consensus, and no correct opinion. Journalists can therefore choose from a diverse range of professional opinion. We have found that the British media tend to favour an organic course for the syndrome.

    Journalists' views

    The unstructured interviews with the medical journalists gave some insights into newspaper coverage of the chronic fatigue syndrome. All agreed that their primary criterion for covering this or any other topic was “will it make a story?” Hence although the journalists were often aware of other research papers, they did not cover them because they were not newsworthy. This is not a criticism of journalists since writing newsworthy stories is their job.

    The journalists all agreed that several aspects made the chronic fatigue syndrome a particularly good story during the 1980s. The label “yuppie flu” made an eyecatching headline and gave the subject a wider, if inaccurate, social context. Several also commented on the influence of AIDS. Although the British press does not directly link the syndrome with AIDS (unlike the American press, where the analogy is common), many noted the parallels between the two “new conditions.” This point has been made elsewhere.3 Four journalists also noted how many of the stories given to them by sufferers confirmed the image of the arrogant, unfeeling doctor who rejected any suggestion of an organic basis to the condition, and thus both discredited the patients' experiences of illness and contributed to patients' dissatisfaction with traditional medicine. Chronic fatigue syndrome was viewed as part of the modern reaction against medical authority and paternalism and hence a valid subject for reporting.

    Finally, the journalists noted that the syndrome had caused a genuine difference of opinion within the medical profession and had also led to frequent disputes between patients and doctors. The tendency to favour one side or the other was inevitable. One journalist told us: “Balance isn't interesting: it doesn't make a story.” Another has written “there is no middle ground when it comes to CFS.”4 Overall, the highly charged medical, social, and political atmosphere surrounding the subject made it good copy.5 We are also part of this climate and despite trying to be objective our own views and prejudices must have intruded into our findings.

    Balance of coverage

    The imbalance between professional and media coverage was most noticeable in the women's press. The health pages of these magazines often follow a coherent theme - that of empowerment in health and lifestyle. They promote the philosophy that “total health” is possible if you follow the appropriate diet, take the appropriate nutritional supplement, or adopt the appropriate lifestyle. The unsubstantiated claims concerning the efficacy of changes in nutrition, diet, and lifestyle in the chronic fatigue syndrome6 fit in with this philosophy.

    The current media coverage of the chronic fatigue syndrome amplifies and distorts the divisions within the medical community. Distortion of professional opinion, particularly concerning new hazards to health is not new,7 although we are aware of few subjects that generate the same intensity of feeling. As Collee noted “at any dinner party you will find the friends of sufferers, who will either support or hotly dispute this view [usually with] ferocity.”8 The syndrome falls into the category of illnesses that cannot be debated dispassionately.9

    Press coverage of the chronic fatigue syndrome usually reflects a disease model in which one pathogenic agent causes a specific pathological event that will, in time, be cured by a single magic bullet. This is an accurate version of a medical model of the syndrome but we do not believe it is the best way to approach a complex chronic condition. A biopsychosocial model would be more appropriate.*RF 2,10-12* Instead, much of the press coverage of the chronic fatigue syndrome shows a lack of understanding of psychological medicine and its practitioners. There is often an unintentional perception that a physical disease is more valid and deserving of sympathy than a psychological disease, as characterised by the dismissive term “all in the mind.” Many stories were fuelled by, but also contributed to, the stigma of psychological disorder. Several journalists spoke of the anger provoked by articles which did refer to psychological causes. In consequence, two journalists said that they did not want to write any further articles on the subject.

    The polarised nature of the press coverage of the chronic fatigue syndrome does not always shed light on the condition and also plays a part in adding to the unhelpful and arbitrary divisions already present in the medical literature. This also contributes to the polarised and unhelpful nature of many encounters between patients with the chronic fatigue syndrome and their doctor as frequently described in the self help literature.

    Acknowledgments

    We thank the medical journalists who agreed to be interviewed for their cooperation and Dr Peter Littlejohn, St George's Hospital Medical School, for his advice.

    References