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Mission: The mission of the cfids association of america is for me/cfs to be widely understood, diagnosable and treatable by: identifying safe and effective treatments for me/cfs; strengthening the me/cfs community by empowering patients and engaging greater numbers in our cause; and aggressively expanding funding for research that will lead to approved treatments and cures for me/cfs.
Results: Since 1987, the Association has invested more than $30 million in programs to end the pain, disability and suffering caused by CFS.
Programs: Research - the cfids association has worked over the past 5 years to invest our constituents' donations in our research institute without walls (riww). Our innovative riww continues to provide early funding to the most promising researchers, using our solvecfs biobank to put patients at the center of that research; pairing patient samples and clinical information with the brightest investigators from the best medical institutions in the world. The research institute without walls focuses on: identifying disease subtypes and biomarkers (45%), developing disease-modifying treatments (25%), defining me/cfs (20%) and software tools (10%). Identifying disease subtypes and biomarkers - me/cfs is a multifaceted and complex disease. To discover the cause and effective treatments we must break down the complexity and identify groups of patients that are similar to one another. How is that done? With blood and clinical information. Blood is a 'molecular biopsy' that can provide clues to biology from all parts of the body. The solvecfs biobank harnesses the power of patient information and patient samples. The biobank has attracted some of the brightest investigators from the best medical institutions including harvard, columbia, johns hopkins, university of alberta, nyu langone medical center and university of toronto. Developing disease-modifying treatment - while funding cutting edge research to identify a cause, we are also identifying treatments that can help restore function and alleviate symptoms of me/cfs. While we work towards a cure we must develop disease-modifying treatments. Defining me/cfs - diseases must be clearly and unambiguously defined so that causes, and the cures can be discovered. We partnered with lenny jason of depaul university to use the data from the solvecfs biobank to help refine how me/cfs is defined. This research will help identify the "core signs and symptoms" of me/cfs so that the disease can be measured the same way by all investigators. The cfids association of america is working on a partnership with a real-time online platform where people can connect with fellow patients and expand our capacity for patient centered outcomes research through their shared data. The data can help researchers better understand the nature of the illness, detect patterns, and develop more effective therapies. Partnering, combining,g and growing our community, we will create a big data set of "well-defined and reliable" patient-reported outcome measures to provide evidence of treatment benefit. Managing, understanding and using this kind of big me/cfs data will be key to innovating the effective treatment for me/cfs patients. Software tools - we have partnered with a biotech company to build a digital library - one centralized knowledge base - of all the me/cfs medical literature and all open source biological data sets. This digital library brings the information to one place and translates it into a standard form. Software is under development to integrate this knowledge in order to generate theories that can lead to therapies.
communications and engagement - the association knows that we can't achieve our goals without an informed and connected patient population. Patients are a key ingredient to making me/cfs understood, diagnosable and treatable. To that end, we are working to empower patients with more information through our catalyst cafés, e-newsletters, the solvecfs chronicle publication and online. More than a quarter of a million people visited the cfids association website last year, most searching for answers, looking for hope. The association holds the most extensive library of patient information and resources, reports on the latest updates and research opportunities and helps patients feel less alone. In an effort to make this information easier to find, readily share-able and more deeply engaging we launched a new web presence which replaces the solvecfs biobank micro-site, cfids. Org and the research1st blog with one synthesized online presence. The synergy achieved through www. Solvecfs. Org will reach more patients, engage more in the research process, and better involve all me/cfs stakeholders in the important work of the association. Early numbers tell us that people are staying on the site more than twice as long as they did on the old website - a key indicator that visitors are finding what they need in a more welcoming format. We continue to hold catalyst café events across the us. Meeting in homes and offices, restaurants and community rooms, association staff members are bringing details about our research program and its impact to people who are most affected by me/cfs.