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Misdiagnosing the unexplained

Wilhelm Wundt (seated) with colleagues. Wundt is credited with setting up psychology as a field of scientific inquiry independent of other disciplines.

The April issue of The Psychologist (the house journal of the British Psychological Society) has published a letter from Joan Crawford, Chair of Chester ME Self-help and one of our old friends, a letter worth reading in full. In it, she responds to an article in the December 2013 issue which described some current thinking about ‘medically unexplained conditions’, the loose term used by some healthcare professionals when they speak about chronic conditions like ME/CFS, fibromyalgia, irritable bowel syndrome etc.

Joan points out that the idea that misdiagnosis is rare in these chronic illnesses needs to be challenged. As she says, “As the Chair of a UK-based myalgic encephalomyelitis self-help group with 260 members in the North West of England, I have been made aware of at least 18 different misdiagnoses in 12 different patients recently.” And her personal experience chimes with published evidence that, far from being rare, misdiagnosis is very common (see Misdiagnosis on a Grand Scale). In fact, two good studies have shown that almost half of patients referred from primary care with a diagnosis of ME/CFS actually have another medical condition – something not discovered until they are lucky enough to be seen at a specialist clinic. And a recent investigation of labels given to multiple sclerosis patients up to 3 years before diagnosis found that around 29% (of 5305 patients) had been given ‘fatigue-related’ diagnoses – the type most likely to be described as ‘medically unexplained’.

As Joan continues, “Patients can be given the impression, consciously or otherwise, that their symptoms and suffering are not of worth…This self-blaming and shaming approach can silence patients discouraging them from further medical interaction and, I would suggest also, additional emotional and social support. Together it is clear that this can have tragic consequences for patients and their families. I would urge anyone working with patients to take time to reflect on the impact of undermining the validity of patients’ experiences via psychologisation and to explore more meaningful aspects of patients’ distress, which may in the longer term reap greater benefit.”