Mendus
Mendus is a free online platform where patients can propose, help design and participate in, their own research studies. The site was developed and is run by neuroscientist Joshua Grant; a CFS patient. Patients are offered guidelines for do-it-yourself studies investigating a range of proposed remedies for ME/CFS, fibromyalgia and other disorders. Each patient is responsible for his/her own self-study and are provided with their results. As sets of results accumulate the idea is to merge the data to allow traditional analyses. The goal of the site is to a) provide patients with a more systematic way of testing how various treatments work for them and b) standardize the treatment enough to allow assessment at the group level. Mendus aims to blend the quantified-self approach to research with the traditional approach to serve both the individual and the community.
As of the end of 2015 Mendus had over 10 studies available to ME/CFS patients, after only 9 months of operation. Studies have expanded in sophistication with several cutting edge projects at the planning stage. The organization is not funded and is being run single-handedly. A transparent affiliate scheme has been adopted to attempt to cover operating costs. Members are encouraged to shop and even request links to stores of their choice in order to keep the site running.
