The Canadian Institutes for Health Research has just emailed requests for patients with fibromyalgia to participate in a survey to set research priorities for FM in Canada. (I would believe that the same process will be applied for ME at a later date) If you have fibromyalgia and live in Canada, i urge you to participate and get your voice heard. Solving the Fibromyalgia Mystery: Researchers need your help. Seeking people living with fibromyalgia, their families, caregivers and health professionals involved with helping them to share what is most important for fibromyalgia research. It is anticipated that the findings of the adult fibromyalgia priority setting exercise will be reported to funding and research agenda setting organizations such as the Canadian Institutes of Health Research as well as the major research funding charities. The JLA Protocol is posted on CIHR-IMHA’s website (see below) Link to the survey: http://www.surveygizmo.com/s3/20573...il&utm_term=0_20a3cd878c-9d8a113e5d-392527846 Note: this is for Canadians only. Feel free to share with your networks More about the James Lind Alliance: James Lind Alliance: Adult Fibromyalgia Priority Setting Partnership The aim of the Adult Fibromyalgia Priority Setting Partnership (PSP) is to identify the unanswered questions about the management of adult fibromyalgia from patient/caregiver and clinical perspectives and then prioritize those that patients/caregivers and clinicians agree are the most important. Contact Information Nicole Szajcz-Keller Assistant Director CIHR Institute of Musculoskeletal Health and Arthritis Phone: 204-318-2551 Nicole.Szajcz-Keller@umanitoba.ca Background This PSP is a Canadian project overseen by the Institute of Musculoskeletal Health and Arthritis (IMHA) of the Canadian Institutes of Health Research (CIHR), in consultation with the National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre (NETSCC), UK. Its aim is to provide an infrastructure and process to help patients/caregivers and clinicians work together to agree which are the most important treatment uncertainties affecting their particular interest, in order to influence the prioritization of future research in that area. The James Lind Alliance (JLA) defines an uncertainty as a “known unknown” – in this case relating to the effects of treatment. Please visit the James Lind Alliance website for more information about Priority Setting Partnerships. Objectives The objectives of the Adult Fibromyalgia PSP are to: engage patients, caregivers, and clinicians in a priority-setting exercise that would identify the scope of uncertainties in the management of adult fibromyalgia; agree by consensus on a prioritized list of those uncertainties, for research; publicize the results of the PSP and process; take the results to research funding bodies to be considered for funding. Please read the Protocol for more information including partner criteria, a list of steering committee members, and methodology.