It’s Time to Pay Attention to “Chronic Fatigue Syndrome”

By Diane O’Leary.

Professional and public debate about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has reached a new pitch.  A London Times article in August described the “acrimonious scientific row” that’s erupted in the UK now that the US Institute of Medicine, National Institutes of Health, and Centers for Disease Control insist that ME/CFS is not a psychosomatic condition, but rather “a serious biological disease”.  Just a few weeks ago the issue was raised in Parliamentary debate, with a long stream of MPs taking a vocal stand on behalf of their constituents with ME/CFS, demanding a new practice guideline that protects access to biomedical care.  (To be clear, no biomedical treatments exist at this time. These MPs, and the patients they represent, demand access to biologically-oriented medical support, with symptomatic treatments and testing as indicated.)

For UK professionals in medicine, psychiatry and health policy, this is no minor scuffle. According to the Times, divisions over ME/CFS management have reached the level where one professional referred to another by email as a “disgusting old fart neoliberal hypocrite”. The trouble is that the UK is the conceptual home of the mental health approach to ME/CFS, and proponents of that approach are valued leaders in medicine and psychiatry. More than that, ME/CFS has long served within psychosomatic medicine as the quintessential psychosomatic condition, so a global reversal of opinion on this would shake the foundations of that field. This is no ordinary treatment debate.

Two aspects of this situation are strange – very strange. First, where is the voice of ethics? For decades the public has pursued a vocal concern about access to biomedical care for ME/CFS, while bioethics has remained silent. Now that battle lines have shifted, now that this is a debate among professionals, isn’t it time that bioethics helped to clarify its ethical parameters? The right of access to biomedical care is certainly a bioethical issue, one of very few to receive regular coverage in the mainstream media. Why has this issue seemed undeserving of professional ethical attention?

Second, psychiatrists who originally established the UK’s prominence in this area are, quite rightly, engaging in vigorous professional and public debate at this time.  The UK’s practice guideline is now under revision, and discussion of this kind is necessary to move forward. The trouble is that the focus of this debate is far off track – and no one seems to have noticed.

Debates about ME/CFS have long focused on science supporting the biomedical side versus science supporting the psychosomatic side – but regardless of one’s views on that issue, the new US conclusion has greatly increased the risk involved in psychosomatic management. It is possible that the voices of the IOM, NIH and CDC are correct and the 250,000 ME/CFS patients in the UK are suffering from a serious, disabling biological disease. No matter what your views are on the scientific debate, you must recognize that this possibility is far, far greater now than it was in the past, and that means the focus of debate must change.

It is no longer useful to insist that research on the psychosomatic side has been scientifically successful. Even if everyone magically agreed about that, the most pressing question would remain unanswered: is that research strong enough to support the new level of medical risk involved with psychosomatic management? Perhaps it is, but we cannot begin to make that assessment until we form the question. It makes no difference whether biological treatments are available at this time. It is a very serious matter to risk denying access to biomedical care for patients with an incurable disease.

Evidence-based medicine is driven by the effort to minimize medical risk.  In the area of ME/CFS, however, it has long been routine for psychosomatic research to proceed as if medical risk can be ignored, as if it simply is not possible that patients with this poorly understood condition are suffering from a biomedical disease.  That oversight can no longer be maintained in credible debate and research.

Even in the midst of an “acrimonious scientific row” we must follow the course of evidence-based medicine. Debate about ME/CFS management must now be focused on the risk of denying access to biomedical care for patients suffering from serious disease.  When management discussions ignore this issue, they’re not about medicine. They’re about reputation – and when patient care has come to depend on disputes about reputation, medicine is very sorely in need of ethical input.

 Author: Diane O’Leary

Affiliation: Visiting Fellow, Rotman Institute of Philosophy

Conflicting interests: Non declared

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