What We Do and Why
The Short Answer
There is a new age in health management upon us. Empowered patients are now turning to the web to seek their own management strategies for a vast array of disorders. Powerful tools now exist for analyzing patterns in one’s symptoms, lifestyle, behavior and environment. Truth be told, it can all be a little daunting. To maximize the benefit of these tools for both the individual and the larger community, this information needs to be properly analyzed, interpreted and integrated with existing knowledge.
Mendus provides a free platform where individuals seeking answers about their disorder or symptoms can unite with like-minded people in our "Communities". They can share experiences, interact with research scientists, generate research questions and actively explore answers to those questions. Each community will organize completely voluntary "Studies", with the help of trained research scientists, where members provide data which can appropriately address the community's questions. The data will be statistically analyzed by research scientists and presented to the community.
In a nutshell, the aim of Mendus is to bring research within reach of those who need it.
A More Complete Answer
I have chronic fatigue syndrome (CFS) and have spent countless hours on related-websites looking for information on possible treatments, often a particular supplement. Typically, I find one or maybe two small scientific studies, with a very modest number of CFS patients as well as a bunch of people on various websites and support groups commenting about their experiences with the supplement. From that ‘data’ I’m forced to come to a conclusion about whether I should try the treatment or not. I'm also a neuroscientist and have been working at the Max Planck Institute for the past 4 years. As a scientist, I’ve had to admit to myself that this is a rather inefficient and unproductive approach to figuring out whether a particular treatment works or not. To answer a question like that we need proper research, with lots of people. But research takes a lot of time, and money... or does it?
Realizing that there are likely hundreds or even thousands of people in the exact same boat as me, trawling the internet for answers, all thinking the same thoughts and asking the same questions, I had a brilliant idea. Why not get these people in the same room and figure out a way to answer our questions, together? That, is what we plan to do at Mendus.
What I'm suggesting is that we build a network of "communities", each centred around a specific disorder, which come together in a common workspace to discuss our questions and concerns about our disorder. Crucially, the process wouldn't stop there. Discussion should be geared toward generating questions and potential ways to get answers to those questions. That is, we would be organizing our own research! And why not? We could wait years or indefinitely for traditional research to find the funding or interest to test some of our questions. If each of us was independently planning to do a little self-experimentation anyway, than why not coordinate our efforts and maximize the output?
Such an undertaking will require a lot of organization, knowledge and experience. Research is likely not as straightforward as many might think. This is where Mendus comes in. Research scientists, beginning with myself, would be there to guide the thought process and lead the development of "Studies" which could legitimately answer the questions generated by the community. For example, a simple project might only require a questionnaire or survey to be constructed while more involved projects might require the organization of several 'apps'. The Mendus team will also take care of the database, using our skills and knowledge in research to analyze the data with the appropriate statistical procedures, create graphs and tables and finally present the results to the community. No small feat, but something I'm looking forward to.
Part of the inspiration for Mendus comes from a new movement in health management referred to as Quantified Self. More and more tools (typically apps) are being developed to give individuals the power to blaze a path to more optimal health. But this field can be a little overwhelming. Which app should I be using? What exactly should I be measuring? How do I integrate a bunch of apps and get the most out of my time? After I 'quantify myself' then what? What do I do with all this data? One of the aims of Mendus is use some of these tools, to simplify and guide this self quantification process and to help individuals get the most out of their experiments. Such self-experiments have enormous potential to reveal patterns that could ease the suffering of the individual, for example by revealing links between symptoms and aspects of lifestyle (see the Chronic Fatigue Syndrome Diet Study below). If these individual data sets were to be integrated across larger groups, which is what I envision happening at Mendus, the potential exists for important new discoveries!
So, how do we get started?
Well, we can't do anything without communities of individuals who all share a motivation to feel better. That's the first step; build a community and spread the word. As people learn of the endeavour they can register with one of the Mendus communities (freely of course) and receive their unique member ID. For each community that develops new members will be asked to complete an initial questionnaire that will assess basic health and symptoms related to their specific disorder. This information, and all other data collected, will be completely anonymous, connected only to your unique member ID. After completing the initial questionnaire members can then freely participate in their forums to discuss potential studies to do with other members of the community. Newly proposed studies will carry a Pending tag until enough people express interest. When a certain number of individuals have indicated their willingness the study will proceed to the next phase. The necessary materials and infrastructure will be built, assuming the study is feasible, by the Mendus team. Next, on a completely voluntary basis, interested members will complete the study. Studies will remain active indefinitely. As people discover Mendus, join the various communities and participate in the studies, the results will get more and more statistically reliable. As new ideas are generated through group discussion, new studies will be developed. Ultimately, the sky, and the motivation of the members, is the limit!
As of October 2015 we have five communities, an area for healthy controls and just added our first double-blind, placebo-controlled study to our list of active studies which are slowly collecting data. While we began with ME/CFS this site is open to anyone. You may need to have patience as development has slowed but we'll get there. If you want to start a new community it's simply a matter of sending us an email.
Join me and let's take health into our own hands!
Joshua Grant (PhD)