Posted on 29 September 2021
After 18 months of surveys and consultations with the public, a priority setting partnership of patients, clinicians and carers prepared research priorities aiming to discover more about conditions affecting patients that doctors can find no medical explanation for.
The partnership was supported by the James Lind Alliance (JLA), several charities such as FND Hope, FND Action, FND Networks, INCLUDE, the Universities disability network, Guts UK, Pain UK, Carers UK, POTS-UK, Graham Hughes International, Fibromyalgia Association UK, the British Thyroid Foundation, clinical networks and the Royal College of Psychiatry Liaison Faculty.
Patients, their carers and clinicians contributed from the domains of cardiology, neurology, stroke medicine, gastroenterology, endocrinology, general practice, physiotherapy, occupational therapy, occupational medicine, psychology, neuropsychology, psychotherapy and rheumatology.
The partnership was led by Professor Christina van der Feltz - Cornelis from the Department of Health Sciences of the University of York and the independent JLA advisor was Jonathan Gower. The partnership was funded by the Centre for Future Health. The Centre for Future Health (CFH) has been established with funding from the Wellcome Trust and the University of York to support new collaborative projects that will address some of the most important health issues and challenges facing us today and into the coming decades.
The partnership is international as a Dutch Priority Setting group supported by Tilburg University is running a similar process simultaneously. They will present research priorities for the Netherlands next year. The Anglo-Dutch partnership will 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 of Medically Not Yet Explained Symptoms (MNYES).
Medically Not Yet Explained Symptoms represent up to 10 to 30 per cent of cases in general medicine. They can include fatigue, pain, dizziness, bowel problems, unexplained blackouts, seizures or sudden loss of awareness and functional neurological symptoms.
When asked why they wanted to be involved in this project, a workshop participant responded saying: I have lived with MNYES since 2009 with various admissions to hospital. In the last six years I have had to give up my job and am still seeking a diagnosis.
Professor van der Feltz - Cornelis said: “People may have a diagnosis such as Functional Neurological Disorder (FND), Fibromyalgia, Irritable Bowel Syndrome (IBS) or Chronic Pain without fully understanding what has been the cause of these problems or the best way to treat them.
“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 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.”
Annie Shaw who suffers from Functional Neurological Disorder said: “My brain basically rewired itself and the right side of my body is affected. I have constant pain, tremors in my hand and foot, constant fatigue and am unable to use my right hand as I have little control of what it does and I can’t stand for long and have gait problems walking.
“I am disabled and unable to work but I have come to terms with the big stuff in the main but it’s the small things like, for example, not being able to open ring pull cans that really frustrates me.”
Researchers identified several different areas of study including: what treatments work best for patients, how clinicians can collaborate effectively to form the most appropriate care pathways for MNYES sufferers; and what outcomes matter most to patients.
This project received funding from The Centre for Future Health Partnership Fund, a collaboration between the Wellcome Trust and the University of York that is committed to nurturing excellent research in the area of health and wellbeing across all disciplines.
For more information on the research priorities see the website.