my colleague Joan Crawford wrote the following letter to the Journal of Psychosomatic Research, it highlights that IAPT advises its’ clinicians not to use the term Medically Unexplained Symptoms (MUS). Her letter was rejected. But Prof Chalder, Improving Access to Psychological Treatments (IAPT) adviser on MUS and LTC’s (long term conditions) , regularly holds workshops using the MUS descriptor (see webcast for BABCP sponsored Workshop on June 8th 2020). Joan’s letter reads;
‘The systematic review into the use of language and relational issues during the patient-doctor interaction where there is medical uncertainty is welcome . However, there are flaws in the methodology and underlying assumptions within this paper that require closer examination.
Medically unexplained symptoms (MUS) were not clearly defined. A broad, assumptive approach was used which included: chronic fatigue syndrome, fibromyalgia and irritable bowel syndrome, without justification or criticism. These are all separately listed World Health Organisation medical conditions . Using MUS gives an illusion of medical respectability, which is ambiguous if not misleading. At no point was there recognition of controversy of the MUS approach or any engagement with extensive alternative literatures. While many routine tests may fail to find a specific underlying disease, it is misleading to assume; therefore, that no objective abnormalities can be identified.
In the UK, chronic pain (explained or unexplained by routine assessment), including fibromyalgia, is managed within the NHS via pain management programmes. This is under the rubric of The British Pain Society guidelines . Such an approach teaches patients the central sensitisation and dysregulation model of chronic pain. This science-based model encourages patients to pace, plan and prioritise tasks to maximise activity; set appropriate goals; minimise flare ups and to live well despite being in pain. At no point does the evidence suggest that their pain is medically unexplained, quite the opposite. Patients adapt well to this model. They improve their self-efficacy, reduce distress along with decreasing presentation at their GPs unnecessarily as they have the confidence to decide how to best manage themselves.
Taking the MUS approach has the potential to de-validate patients’ symptoms as described in this paper . Patients can erroneously be given the impression during the medical encounter, consciously or otherwise, that their symptoms and suffering are not of worth; that they are derived
from within themselves via a self-generated, autopoietic mechanism , which they have the power to overcome. For example, “MUS arise when benign bodily sensations, such as those resulting from normal variation, emotional disturbance or minor pathology, are selectively attended to and misinterpreted as evidence of illness ; the resulting changes in behaviour (e.g. reduced activity) and physiology (e.g. increased autonomic arousal) then create a vicious cycle that maintains symptom reporting.” . The apparent rarity of misdiagnosis is often cited as good reason to proceed with a MUS approach. Of note, Newton  reviewed 375 patients attending a CFS clinic in England and found that 40% of patients did not to have CFS. Caution is required.
What evidence does the practitioner have that their option is sound other than their own belief? Should the patient not return, does the doctor then conclude that the patient has been cured of a false belief? Or has the patient abandoned hope that their practitioner can help them? Deary’s cognitive behavioural model  is potentially self-blaming and shaming which can silence patients discouraging them from further medical interaction and emotional and social support. Patients’ can experience disbelief about their symptoms as an assault on their sense of self. This causes harm and unnecessary suffering. This can have tragic consequences for patients and their families.
Openly sharing the speculative MUS model in the clinical context would allow the patient to decide if it has face validity. Worryingly in the UK, IAPT clinicians are encouraged to not use the term MUS . This is duplicitous. Obfuscation here is dishonest and unethical . It is encouraging to note that, “healthcare providers are cautious when raising psychosomatic attributions”  as the evidence base for such is flimsy. The absence of good quality evidence-based objective, real world changes for psychological or behavioural interventions for MUS was omitted and therefore not subject to critical analysis . The paper does approach the importance of the psychosocial context; however, it fails to critically analyse the social and emotional consequences for the patient.
It is unfortunate that some doctors continue to have negative experiences. This may well be true for those who are not up to date in their knowledge. When current information is shared with patients, they are enlightened and appreciative of clinician’s honesty and skills.
There is a sense from this paper that clinicians should continue fear encounters with patients. Perhaps there is nothing to dread from such consultations if one approaches this with a sense of humility  and a science-based model and positive mindset. There needs to be honesty in the clinical and therapeutic environment. This needs to hold the tension with uncertainty, without the ethically dubiously, “subtle persuasive conduct”  imposing a blaming and shaming model on the patient due to lack of clinician resilience or knowledge . Share the model openly [4,5] and allow the patients to vote with their feet. Those who find it meaningful will stay. The key here may be to build healthcare providers’ resilience to cope with and tolerate uncertainty and ambiguity.
 I. Stortenbeker, W. Stommel, S. van Dulmen, P. Lucassen, E. Das, T. I. Olde Hartman, J. Psychosom. Res. 132 (2020).
 World Health Organisation, International Statistical Classification of Diseases. https://www.who.int/classifications/icd/en/
 The British Pain Society, Guidelines for Pain Management Programmes for Adults (2013).
 V. Deary, T. Chalder, M. Sharpe, The cognitive behavioural model of medically unexplained symptoms, Clin. Psych. Rev. 27 (2007) 781–797.
 R. Brown, Explaining the unexplained, The Psychologist, 26 (12) (2013) 868-872.
 J.L. Newton, H. Mabillard, A. Scott, A. Hoad, G. Spickett. The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same, J R Coll Physicians Edinb. 40 (2010) 304–307.
 NHS IAPT Medically Unexplained Symptoms/Functional Symptoms – Positive Practice Guide, (2014).
 D. O’Leary, Ethical management of diagnostic uncertainty: Response to open peer commentaries on, “Why bioethics should be concerned with medically unexplained symptoms,” Am J. Bioethics. 18 (8) (2018) W6-W11.
 K. Geraghty, M. Scott, Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified, BMC Psychol, 8 (13) (2020).’
Well argued Joan
Dr Mike Scott