A recent investigation led by the University of Aberdeen has highlighted significant shortcomings in the care provided to individuals with fibromyalgia. The study, part of the Patient-centered Care for Fibromyalgia: New pathway Design (PACFiND) project, revealed that patients often endure lengthy waits for diagnosis and face varying levels of access to care across the UK.
The team, guided by Professor Gary Macfarlane and Dr. Rosemary Hollick, surveyed over 2,700 patients and health care professionals, analyzed data from nearly 100,000 individuals, and engaged with those living with fibromyalgia to compile a comprehensive overview of their experiences. The results indicate a pressing need for a systematic overhaul of services to better support patients.
Fibromyalgia is a chronic condition characterized by widespread pain, fatigue, and cognitive difficulties, such as brain fog and memory lapses. It affects approximately 1 in 50 people, yet many struggle to receive a timely diagnosis. In the UK, it is estimated that only 1 in 4 individuals with the condition obtain a diagnosis after an average wait of around three years.
Through their extensive research, the PACFiND team identified critical obstacles faced by patients, including prolonged delays in receiving recognition for their symptoms. Many participants reported experiencing a “revolving door” of appointments and referrals to various health services, which often resulted in unnecessary tests and inadequate support. The study also uncovered substantial disparities in service availability, commonly referred to as “postcode lotteries,” which leave many patients without necessary care.
The investigation revealed that many primary care professionals lack confidence in diagnosing fibromyalgia, and some hold unhelpful views regarding the condition. In response to these findings, the PACFiND project team is developing a toolkit aimed at guiding policymakers, clinicians, and patient groups to implement more effective care pathways. This toolkit is set to be released in early 2026.
Professor Macfarlane emphasized the widespread challenges faced by individuals with fibromyalgia, stating, “Many people with fibromyalgia face long waits for recognition and inconsistent access to care. Our work shows these challenges are widespread and often compounded by uncertainty among health care professionals.” He advocates for a focus on earlier diagnosis and more patient-centered pathways to enhance the consistency of care.
Dr. Lucy Donaldson, Director of Research at Arthritis UK, underscored the importance of timely and accurate diagnoses for individuals living with fibromyalgia and related conditions. She stated, “We still don’t fully understand the causes of fibromyalgia, but what we do know is that rheumatoid arthritis and axial spondylarthritis are often associated with fibromyalgia. The findings of this research will help people feel heard and seen.”
Dr. Hollick further noted the detrimental impact that prolonged diagnostic processes can have on patients. “People with fibromyalgia often face years of appointments, repeated tests, and prescriptions for medications that may do more harm than good. This not only takes a toll on patients but also places unnecessary strain on health services,” she explained.
The PACFiND team’s research aims to create a more supportive care environment, reducing unnecessary investigations and improving the quality of life for those affected by fibromyalgia. Enhanced care pathways can help individuals manage their symptoms more effectively and remain active in their daily lives, including education and career pursuits.
For further details on the PACFiND project, visit the University of Aberdeen website: www.abdn.ac.uk/achds/research/projects/pacfind/.
