• Why is this important?
• Aims and scope of the project
• Study processes
• The Priority Setting Partnership - UK
• The Priority Setting Partnership - Netherlands
• Initial Survey - UK
• Interim Survey - UK
• Priority Setting Workshop - UK
• Top-10 Research Priorities for MNYES - UK
• Top-10 Research Priorities for MNYES - Netherlands
• Next steps
• Contact

Why is this important?

Medically Not Yet Explained Symptoms (MNYES), represent up to 10-30% presentations in general medicine settings. They can include fatigue, pain, dizziness, irritable bowel syndrome, and functional neurological symptoms (FND). They are often deemed to be stress-related, and comorbid depressive or anxiety disorder occur in approximately 30% of cases. Patients diagnosed with such symptoms, although care may be taken to explain their condition properly, often do not feel that they are taken seriously. They have to deal with high disability as well as with clinicians who may find MNYES hard to manage. They visit many clinics for diagnostic procedures to hear ‘it is all in your head’. Treatments may pay little attention to their patient experiences and have limited effect.

The focus of research on MNYES is often on particular subsets of symptoms, such as chronic pain, chronic fatigue, irritable bowel syndrome, dizziness etc. but lacking a comprehensive view. This has ramifications for patients who visit different clinics for their various symptoms, without sustained improvement.

There are many different terms used for this condition: Persistent Somatic Symptoms, Somatic Symptom and Related Disorders (SSRD), Medically Unexplained Symptoms (MUS), functional symptoms, chronic pain, conversion disorder, Irritable bowel disorder (IBS), dissociative syncope, dissociative neurological symptoms, functional neurological disorder etc. For this PSP, and the common denominator seems to be distress amongst patients, carers and clinicians in the context of conditions that are difficult to explain, the PSP will be termed Medically Not Yet Explained Symptoms.

The European Association of Psychosomatic Medicine has recently published a research agenda in this domain, one of the research priorities being patient preferences for research in this field. There is still relatively little support available for people with Medically Not Yet Explained Symptoms and those who care for them to get involved in setting the research agenda. The purpose of this PSP was to support patients, carers and clinicians in the UK and in the Netherlands in the development of a research agenda with patient knowledge, experience and preferences as the frame of reference. The Anglo-Dutch partnership will additionally enable exploration of international and intercultural differences that might be of interest for future development of services and the co-design of research to develop better treatment and care.