SMCI Research Program – For PatientsDecember 19, 2016
As a patient, you play a critical role in advancing research in ME/CFS.
This program is built on a foundation of three core principles: being participatory, predictive, and personalized.
Participatory Research – The gap between basic and clinical research exists because patients have not played a large enough part in the discovery process. Our program operates on a participatory research platform to make it easy for ME/CFS patients and people who care about them to be involved in basic and clinical research. Participatory research puts the patient at the center of ME/CFS discovery. Understanding your role and value in the research process is critical. We hope to be a conduit for that empowering information.
Predictive Measures – Your participation provides us with the data—big data—that is needed for predictive research. Our program is building a world-class information technology platform that will help identify ME/CFS subtypes and find treatment solutions. By giving those closest to ME/CFS—patients and those who care about them—a means to collect and share their data (biological, clinical, anecdotal, and experiential), we will be able to identify critical elements that will lead to big discoveries. Data drives progress, and we can’t get the data without you.
Personalized Treatments – ME/CFS is a complex disorder that affects people differently. A treatment that works for some will not work for others. One size does not fit all. The goal of our patient-centered program is to support, conduct, and partner in research that ultimately provides safe and effective treatments for every individual ME/CFS patient.
Clinical trials are the final phase in the lengthy drug development process. They are a critical and required step to speed cures. But a persistent shortage of volunteers for clinical trials slows scientific progress. Patients pay the ultimate price for under-enrollment in clinical research, facing few new treatment options.
- 30% of all clinical trials fail to recruit a single person
- 85% of clinical trials face delays due to limited participation
- Fewer than 10% of patients ever take part in trials, despite overwhelming interest in working with scientists to help speed treatment breakthroughs
How You Can Participate in Research
Lend financial support; any level of investment fuels the path forward.
The Solve ME/CFS Initiative is the most comprehensive information source for ME/CFS patients and others interested in the condition. Our goal is to be a resource for all those affected by and living with ME/CFS today while we continue to search for answers for a better tomorrow.