Advancing Science: A Case for Hope, A Look AheadDecember 20, 2013
Advancing Science with Our Research Institute Without Walls
The Solve ME/CFS Initiative has worked over the past 5 years to invest your 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
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 your information and your sample and puts You at the center of research. 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. As an example, in 2012, the Solve ME/CFS Initiative, together with BioVista, succeeded in identifying a new drug combination therapy in 11 months – an unprecedented success story in drug discovery. The combination therapy targets major symptoms of ME/CFS including fatigue, pain and sleep disturbance.
Diseases must be clearly and unambiguously defined so that causes, and the cures can be discovered. We have 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 Solve ME/CFS Initiative 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 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.
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.
Other Important Areas of Investment
Helping Your Voice be Heard on a Federal Level
The Solve ME/CFS Initiative is focused on efforts to fund and conduct research leading to improved methods of diagnosis and treatment of ME/CFS. We recognize the importance of the federal government for two key reasons. First, FDA is responsible for approving all drugs and medical devices for use in the US. And second, federal recognition of the public health impact and burden of ME/CFS and pro-actively stepping up to its role in protecting the health of Americans is important to successfully defeating this illness. We can disagree at times with how it is wielded, but we cannot ignore that power.
While the federal government historically has a perceived lack of urgency in issues related to ME/CFS, we have seen specific evidence that ME/CFS is on the federal radar. In our blog post we lay out tangible, specific activity – including the appointment of the IOM committee to develop clinical diagnostic criteria – that we feel indicates an important opportunity to build an emboldened base of federal support, opening the door to validation, funding and research.
Read More HERE.
Connecting with Patients, Fueling Research Involvement
We know that we can’t achieve our goals without an informed and connected patient population. You 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 e-newsletters, the SolveCFS Chronicle publication and online.
More than a quarter of a million people visited the our website last year, most searching for answers, looking for hope. We hold the most extensive library of patient information and resources, brings the latest updates and research opportunities to your fingertips and helps patients feel less alone. In an effort to make this information easier to find, readily share-able and more deeply engaging we have launched a new web presence which replaces the SolveCFS BioBank micro-site 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. In fact, 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.