Aims and scope of the project

To identify the unanswered questions about Medically Not Yet Explained Symptoms (MNYES) from patient, carer and clinical perspectives and then prioritise those that patients, carers and clinicians agree are the most important for research to address.

The objectives of the Priority Setting Partnership (PSP) are to:

work with patients, carers and clinicians to identify uncertainties about the aetiology, diagnosis and treatment of MNYES; about organisation of services, and social consequences and costs
to agree by consensus a prioritised list of those uncertainties, for research
to publicise the results of the PSP and process
to take the results to research commissioning bodies to be considered for funding.

This work focused on the aetiology, diagnosis and treatment/care of patients with MNYES in the UK and Netherlands, as well as organisation of services, social consequences and long term outcomes including cost implications for patients. We included international exchange and exploration in the form of parallel UK and Dutch partnerships. Confirmed topics included (but were not limited to): pain, fatigue, dizziness, functional neurological disorder, bowel symptoms, palpitations and syncope. Ages 16 and older were included. Although fatigue was in scope, Chronic Fatigue Syndrome was considered out of scope since there is another PSP addressing this.