Medically Not Yet Explained Symptoms: Be Part of Research

23rd July 2020

Medically not yet explained symptoms (MNYES) priority setting partnership (PSP)

Have you got 10 minutes to spare to help guide future research?

Guts UK are helping the University of York, The Clinical Center of Excellence for Body, Mind and Health (Tilburg), and Tilburg University to share with our community this vital priority setting partnership between patients and healthcare practitioners.

A priority setting partnership is a means of involving patients in driving research questions that are important to answer from the expert by lived experience. These include the patient, their families, and carers but also healthcare practitioners who treat people with these symptoms.

We often hear of people in our community with symptoms where healthcare professionals have not been able to provide a diagnosis. Where people experience long-lasting digestive system symptoms, and medical tests and investigations don’t identify the diagnosis, they are medically not yet explained symptoms (MNYES). One example of MNYES is irritable bowel syndrome (IBS). The symptoms have also been termed medically unexplained symptoms (MUS) in the past.

Many people experience MNYES. Some research suggests that for GP appointments MNYES represent a significant percentage of the representations, depending on the research viewed. So that people with MNYES and their relatives/carers can benefit, the organisers of the PSP want to give everyone involved a voice to decide which questions should be answered by future research.

Team Guts UK are passionate about this survey. We hear from patients daily who struggle with their digestive symptoms but are yet to receive a diagnosis. Managing pain, being unable to predict symptoms from day-to-day and anxiety surrounding accessing near-by toilet facilities are just a few worries of our community – and all have a devastating impact on the quality of life. This survey will take approximately 10 minutes to complete, but it could take us a step closer to help people with medically not yet explained conditions. Together, we must decide which questions need answers.