"If there is any disease cohort that needs this kind of jumpstart funding, it is the ME/CFS community," Jennie Spotila.
Eleven ME/CFS organizations, including A Race to Solve CFS, CFIDS Self Help, CFIDS Association of America, CFS Knowledge Center, Fibromyalgia-ME/CFS Support Center, Inc., Health Rising, Massachusetts CFIDS/ME & FM Association, OFFER, PatientsLikeMe, Rocky Mountain CFS/ ME & FM Association and Speak Up About ME are competing for $12 million that will fund up to 18 Patient-Powered Research Networks. These 18 Patient-Powered Research Networks will serve as the basic building blocks for a National Patient-Centered Clinical Research Network. This is a tremendous opportunity for the ME/CFS and Fibromyalgia community!
The National Patient-Centered Clinical Research Network will improve our nation’s capacity to conduct research effectively and efficiently. Having ME/CFS and Fibromyalgia in this National framework ‘mainstreams’ research on our disease and will attract the best and brightest investigators. This will give us ample opportunity to not only participate in ME/CFS and Fibromyalgia research but also to enter into the conversation about the types of research that should be done.
Part of the application requires that we describe some basic aspects of our community. If you live in the U.S. and you are a CFS, ME, or Fibromyalgia patient, please take a moment to answer the 5 questions of this survey. We need this information by the end of August, so please take a moment to click through to this survey right now. Answering the 5 questions will take less than one minute. Every U.S. patient can participate in the Research Network; you do not have to be a member of any organization to participate. If you have already answered the survey, thank you. You do not need to do so again.
The survey closes on August 31, 2013, so act now!
Click HERE for the short survey.
A million dollars could go a very long way in our community! Let's all pull together to make this happen!