Health Controversies: Long-Term Disagreement Management Challenges

Abstract

Health controversies involve complex exchanges of disagreements over health and medicine. They unfold differently in different parts of the world, and they often extend over long periods of time. In contemporary argumentation theory, proposals have recently been emerging for “disagreement management at large scale” and for an explicit focus on design of disagreement management methods. Lewiński and Aakhus characterize large-scale disagreement as polylogic: formed of complex networks of players holding contrasting positions that are attacked and defended in multiple places. Large-scale disagreements such as health controversies are important sites for emergence of new disagreement management methods, including new ways of arriving at conclusions about questions of fact (affecting positions) and new formats for coming to decisions about questions of policy (affecting places). The controversy over myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), spanning a period of very rapid change in reasoning about health, has been deeply entangled with the design of new institutional places for managing disagreements about health. It serves well to illustrate both the large, multi-scale structure of health controversies and the importance of long-term disagreement management strategies.

Acknowledgments

I am deeply indebted to Carol J. Devoy for sharing many insights into ME/CFS advocacy. A number of close colleagues have influenced the work presented here, including especially Mark Aakhus, Scott Jacobs, Marcin Lewiński, Jodi Schneider, and Charee Thompson.

Disclosure Statement

No potential conflict of interest was reported by the author(s).

Notes

¹ PubMed was searched using “fatigue syndrome, chronic” as a MeSH term, or “myalgic encephalomyelitis” or “chronic fatigue syndrome” in title, abstract, or keywords; no date restrictions were specified. Lexis Nexis was searched using the same terms occurring in headlines or lead paragraphs, with search restricted to major world newspapers (to avoid artifactual increase due to additions of many online media formats after the turn of the century). The goal was not to capture every relevant item but to search for points when interest in the disease rose or fell. The data underlying these timelines can be queried further using publication metadata (for example by research field or by geographic region); neither of these analyses are relevant to the purposes of this paper.

² There is also evidence in health communication scholarship concerning the difficult interactions ME/CFS sufferers have with family, friends, and coworkers. Explorations of argumentative content are rare, though, except in Thompson’s work on how relational partners justify their doubts about the illness, accumulating various kinds of evidence through observation and stratagem (Thompson & Duerringer, 2020; Thompson & Parsloe, 2019).

³ The report described the course of the disease as having an acute phase, a transitional phase, and a recovery phase, and suggested that many patients would reach a livable recovery phase if they could avoid prolonging or reentering the acute phase. Too much exertion too soon might permanently jeopardize a patient’s prospects for recovery. There was an explicit suggestion that bad medical care (doubting the reality of the disease or pressing the patient to try harder) was a factor in worsening of the disease (p. 64).

⁴ More will be said about the RCTs later, but only one, not reported until 2011, will require individual attention.

⁵ It is known that by the time this report appeared, doctors, patients, and other players outside of the UK were on somewhat different paths. See Jason (2012) for how the controversy was developing in the US in the 1990s and early 2000s.

⁶ Other countries were also developing variously scoped guideline processes, but NICE was one of the first to take on ME/CFS, and its sustained and exhaustively documented involvement makes it unique as a source of data.

⁷ See https://www.nice.org.uk/process/pmg6/chapter/introduction; while the original guideline manual has been replaced by NICE (2014), the basic division of labor remains the same with some change in task performers and tools.

⁸ In particular, although the literature on patient experience has established clearly that women with ME/CFS suffer more delegitimation and disenfranchisement than men, the only mention of this across five rounds of debate is in a suggestion from The ME Association (NICE, 2021c, p. 288) that the guideline should advise doctors to “Be aware that ME is more common in women than men and the negative impacts of gender-based assumptions.”

⁹ Flottorp et al. suggested further that negative beliefs about the treatments should have been disclosed as conflicts of interest, a new and objectionable form of patient disenfranchisement.

¹⁰ The arguments contained in the consultation documents and in GDC discussions of evidence show no obvious indication of misapplication of GRADE—unless one assumes that evidence supporting GET and CBT is in fact strong, which is what the GDC was charged with determining.

¹¹ Monbiot (2024), writing for The Guardian, portrays the proponents of GET and CBT as far from resolution-minded: “Despite an overwhelming weight of evidence, the old believers … have continued to try to justify their model, obliging Nice recently to publish a strong rebuttal.”

¹² There is a marked discrepancy between how the two GDCs graded evidence, best explained by a change over time in the sophistication of the grading tools used and by the heightened scrutiny of RCTs that followed the very damaging critiques of the PACE trial.

¹³ Few US researchers took up trialing the psychiatric treatments developed in the UK. When patient advocacy groups in the US lobby for more funding for research, it is has nearly always been for investment in the search for cause and cure—not for funding larger or better studies of GET and CBT.

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.