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Transforming CFS Research Suzanne D. Vernon, PhD Scientific Director CFIDS Association 'Tis but thy name that is my enemy. Juliet Capulet “CFS” timeline No more “outbreaks” 1956 Outbreak 1956 – an illness resembling Iceland Disease in Punta Gorda, FL; called it epidemic neuromyasthenia. Reported by CDC – D.A. Henderson and Florida public health officials in the J Florida MA High attack rate in women, no agent isolated, population study be determined high attack rate in surrounding hospitals. 1984 Outbreak Physicians reported increased rate of chronic EBV like illness in 1984-85 CDC initiated an outbreak investigation Cases defined as fatigue >1 month, 2 weeks no work, %50 decrease in function. Findings: Cases more likely to reside outside Incline Village (Truckee, CA) Cases more likely to have elevated antibodies to EBV, CMV, HSV-1, -2 Cases more likely to have lymphadenopathy, splenomegaly on medical record review Called it CEBV syndrome CFS Coined in 1988 Expert clinical opinion based on 4 studies published in the early 1980s including Nevada; renamed CEBV-syndrome to CFS Case definition Must have both major criteria of fatigue, exclude medical and psychiatric disease (new or in medical history) AND 6 or more of the 11 symptoms plus 2 or more of the 3 physical criteria OR 8 or more of the 11 symptoms Symptoms: chills, sore throat, painful lymph nodes, muscle weakness, myalgia, post-exercise fatigue, headaches, arthralgia, neuropsychiatric complaints, sleep disturbance, describing the main symptom complex as developing over a few hours or days 3 signs/physical criteria: low grade fever, tender lymph nodes, pharyngitis Commonalities Outbreaks showed high infectivity in closed populations (hospitals, schools); some outbreaks were on the heels of other outbreaks (e.g., polio) Attack rates were high and higher in women (nurses, teachers) and certain age groups (teens, 30-somethings). Clinical characteristics similar: low fever, stiff neck, hyperesthesia, limb pain, post-exertion fatigue, easily brought to tears, relapses and recurrence of certain symptoms. Follow-up studies show a certain percentage of people remain sick with the above symptom complex with some able to return to work part time and other not at all Despite epidemiology supporting infectious etiology, most outbreaks could not isolate agents from a variety of biological samples using a variety of classical virology approaches Is CFS A Consequence Following Current Infectious Disease Outbreaks? Little Progress for a Big Problem • The “one and done” type of studies had limited benefit for improving patient care. • Studies were hampered by multiple case definitions and lack of standardized data and sample collection. • Priorities were driven by “in vogue” hypotheses. In 2008 We Accelerated the Pace of CFS Research Fund innovative studies; leverage existing data; strengthen international collaborations; recruit new talent to the field; and expand communication among scientists to share ideas, knowledge and data. We Networked Scientists We Worked Closely, Collaboratively Gordon Broderick, PhD + 4 Collaborators $4.5 million new funding; 2-3 pubs in process Dikoma Shungu, PhD + 2 Collaborators 2 CFS pubs + 1 in review; NIH grant pending Bud Mishra, PhD + 1 Collaborator Knowledgebase of 250,000 full-text articles + mining tools Marvin Medow, PhD + 2 Collaborators 6 pubs + 1 in review; possible treatment strategy for POTS/OI Kathy Light, PhD Sanjay Shukla, PhD + 2 Collaborators + 3 Collaborators 5 Biomarker pubs; clinical Analyzing first data study (Pfizer); add’l on microbiome now funding (MS + FM); 4 pending NIH grants In 2011, Research is First Our Strategy is to stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment. We Have Deepened Our Expertise Scientific Director Scientific Advisory Board We’ve Learned From and Partnered With Innovators We Established the First CFS Specific Biobank as a Research Resource We Engaged Researchers and Policy Makers We Are the Leading Source of CFS Research-Related Information “Skate to where the puck is going, not where it has been.” Walter Gretzy to son Wayne We are prepared to “meet the puck” and lead the transformation of CFS research. Here is how we will do it. 2011 Research Initiative We issued a new RFA that emphasizes diagnostic markers and treatments. Our new policies require funded investigators to share data and intellectual property. We are collaborating with NIH and others to establish a datasharing platform so projects are fully integrated from the start. A larger, more valuable biobank Participants from anywhere in the world Subjects and samples to match study needs VIRTUAL RESEARCH CENTER Partners in research and design Enhanced research continuity Produce A Biomarker “Hit List” to Drive Research and Innovation Product of Association-funded project led by Dr. Bud Mishra at NYU Expanded Collaborations, Tighter Networks We are working with several groups to develop standardized ways to define and identify cases and collect data to improve comparability of research across all settings. We continue to foster collaborations across disciplines, around the world. Transforming Research by Integration A virtual center to test hypotheses and validate discoveries Rigorously selected investigatorinitiated projects Networking with tools for data collection and sharing Data-derived tools to guide priorities Transforming our approach to research, will raise the bar for the entire field. It will accelerate progress that improves patient care and individuals’ lives. Our Mission: For CFS to be widely understood, diagnosable, curable and preventable. “The best time to plant a tree was 20 years ago… or today” The need has never been greater and the opportunity never more pivotal.