May 7, 2019

James Lind Alliance: Identifying the Top 10 Canadian Research Priorities for Fibromyalgia – a Patient’s Perspective

As a Health Care Professional with a 20-year history as both a patient with fibromyalgia and as a caregiver for a daughter with fibromyalgia, I was invited to take part in the James Lind Alliance Fibromyalgia Priority Setting Partnership with IMHA in 2014. I jumped at the chance. The James Lind Alliance (JLA) is a non-profit making initiative established in 2004. It brings patients, caregivers and clinicians together in Priority Setting Partnerships (PSPs) to identify the Top 10 priorities, or unanswered questions, about the effects of treatments. It aims to make sure that health research funders are aware of the issues that matter most to patients and clinicians.

At last, I felt that someone valued my opinion about my disease and wanted my help to drive future research for fibromyalgia. Could this finally open a door for researchers to discover something to make living with fibromyalgia easier? Fibromyalgia is characterized by widespread chronic muscle, bone and joint pain accompanied by fatigue, sleep, memory, mood and allergy issues. Women are estimated to be four to nine times more likely to develop the disease than men. With more than 900,000 Canadians (approximately 3% of the population) suffering with fibromyalgia, there is a tremendous need for more research into this disease.