Editor’s Comment: You can vote once a day, every day, until the semi-finals are over on December 10. Voting is easy. Just sign in automatically with your Facebook account and click on Vote. The National ME/FM Network is currently in 23rd place, up from 44th place yesterday. To boost them into the top rank vote HERE.
Advancing Research in Canada for Myalgic Encephalomyelitis and Fibromyalgia
The NATIONAL ME/FM ACTION NETWORK is a Canadian charitable organization dedicated to Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) through support, advocacy, education and research.
The 2010 Canadian Community Health Survey (CCHS) conducted by Statistics Canada revealed that there were 411,500 Canadians diagnoses with ME/CFS and 439,000 with Fibromyalgia. The survey also revealed a high level of disability for patients with ME/CFS and FM as well as unmet health care needs. ME/CFS and FM are chronic and severely disabling illnesses. They are as disabling as MS and are more prevalent in Canada than breast cancer, MS and AIDS combined! People are frequently bedridden and become isolated from friends and family – invisible in their own communities. These illnesses are real; the people are real; and they need help NOW!
These illnesses do not discriminate. All races, men and women, rich and poor, adults and children can be afflicted. It is devastating when a child is forced to cope with such a disabling illness.
Currently there are no definitive biomarkers or treatment protocols for ME or FM. Diagnosis is made by comparing patient symptoms with diagnostic criteria, then excluding other possible causes of those symptoms. Treatments are merely a means to manage the symptoms. There is no known prevention or cure. Lacking these basic fundamentals has an enormous impact on our current community and the thousands of people still struggling to be diagnosed. It typically takes years to obtain a proper diagnosis and it’s known that early intervention increases the chance of recovery. We need more research now!
To date, minimal funds have been available resulting in little biomedical research in Canada for these illnesses. Our Canadian patient community are asking for and are in need of biomedical research and solutions. Internationally, patient groups are beginning to take a leadership role by organizing and fundraising to advance research. It’s time Canada takes a lead role in advancing research and shines a light on the severity and complexities of these illnesses.
With the proceeds from the Aviva contest, the National ME/FM Action Network will establish a research arm that will take on the challenge of advancing biomedical ME and FM research in Canada. This will require some legal and accounting expenses. We will unite Canada’s experts and assemble an advisory group, establish our research criteria, investigate the various research opportunities requiring funding, choose our first project and support the execution and reporting of its results in 2015. The research project will incur expenses for salaries for research personnel (postdoc and graduate students) to conduct the study and prepare a paper for publication, expenses for sample selection and participant coordination, cost of laboratory materials used, and charges for use of a facility’s equipment for analysis of the samples. Also a webinar is planned to share the results.
We have several exciting research opportunities to choose from to pursue and complete in 2015 that will benefit not only Canadians but millions of people worldwide, today and in the years to come. To support our researchers, we will use a portion of the funds to complete an international investigation of options to make a biobank available for future Canadian research projects. We also use funds to engage our patient community to determine their preferences for future projects and to communicate our plans with them and the media. Additionally, we will work to build on our relationship with government to obtain long term funding for other projects and to increase their awareness of the 850,500 Canadians in need of their support. This will involve the expense of meetings, mailings and possibility the hiring of a grant writer. The Aviva funds will permit us to solidify the direction of research in Canada and make a significant contribution towards improving the lives of current and future ME and FM patients.
Aviva’s gift will help to us make a difference to the lives of many Canadians.
It will give us credibility in our quest for answers and solutions and hope for a better tomorrow.