Here is a response to the Millions Missing campaign from Liberal MP Hedy Fry:
Thank you for writing to my office with regard to support for those suffering from Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). I appreciate hearing from constituents, as it keeps me grounded and helps me focus on your priorities, as your Member of Parliament.
Our new Liberal government, through the Canadian Institutes of Health Research (CIHR), contributes to the research agenda for conditions such as ME / CFS and fibromyalgia (FM).
The CIHR’s Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA) supports the creation of a national network for translational research in ME/CFS in the current fiscal year. This network will assist in capacity building and offer an a forum to discuss ideas and to share best practices. In addition, this will provide the infrastructure required to undertake therapeutic and diagnostic clinical studies in Canada. Further, this network will set the stage for future international collaborations.
From the very beginning, the CIHR-IMHA has engaged, and continues to engage, with patients and patient advocates through a Knowledge Exchange Task Force (now known as the CIHR IMHA Research Ambassadors), which envisioned the development of a new and innovative approach to link researchers and key stakeholders, many of whom suffer from chronic diseases.
Currently, CIHR-IMHA is also participating in a James Lind Alliance Adult Fibromyalgia Priority Setting Partnership. This partnership’s goal is to solve the unanswered questions on the management of adult fibromyalgia from patient, caregiver, and clinical perspectives, and then prioritize those questions that the participants find to be most pressing. Given the known overlap in FM and ME/CFS symptomatology, this partnership shall hopefully help us to better understand and manage ME/CFS too.
Further information about this work can be found on the CIHR’s website: http://www.cihr-irsc.gc.ca/e/49106.html
Once again, thank you for writing to me about ME/CFS. I appreciate the opportunity to present some of the concrete actions being taken by our government. Please do not hesitate to write again should you have any further questions, on this topic or any other.
Hon. Hedy Fry, PC, MP
Chair, Pacific Liberal