Today marks the beginning of a new endeavour for me and hopefully, many of you. I suffer from Chronic Fatigue Syndrome and have been trying to self-manage my symptoms for many years. Recently, I decided to merge this search with my career as a research scientist. The result is Mendus.
Realizing that I am not alone in trying to manage my own health I decided to start a website that could make this often futile effort more valuable. What I envision is a series of individual communities that each revolve around a disorder of interest (e.g. ME/CFS). Interested persons will become members (for free) and complete some preliminary measures of their demographics (age, gender, etc) and symptoms (all anonymously). Then, as discussions begin and questions with substantial interest arise, I will develop the tools needed to answer those questions. For example, if it was a simple question like, has anyone ever tried whey powder to treat symptoms of CFS, a short questionnaire asking for the community's past experiences would be developed, administered, scored and the results presented to the group. Alternatively, a study could be organized where interested individuals agree on a protocol and all begin taking whey protein and logging the effects. For more complicated questions, or in situations where there simply isn't any data, more extensive solutions would be needed. This leads me nicely to the first study I would like to run. I'll briefly describe that study here and provide a link to where you can get involved.
Over a long period of time I've noticed that what I eat seems to make a difference in my CFS symptoms. However, trying to isolate how exactly diet influences CFS symptoms is a daunting task. Even with extensive logging of food intake and fatigue levels patterns might not be obvious if they're complex or time-lagged. What one would need, to reveal these patterns is: a) lots of data and b) some pretty complex statistics. And that's where the Chronic Fatigue Diet Study comes in, the first proposed project for our first community here at Mendus.
The Chronic Fatigue Diet Study
The CFS Diet Study would be implemented in cooperation with a popular diet and nutrition app. Participants will log, as extensively as possible, everything that they consume, including food, drinks, supplements and medications. They will make symptoms ratings on Mendus. At the end of each week the data will be downloaded by the individual and sent to Mendus where I will sort and merge everything to allow group level analyses. As I plough through the data I will make results available to the group, including where possible, individual results. Hypothetically, the project could reveal things like, the amount of sodium in the average person's diet predicts how tired they are. This could be extremely valuable to each of us in our pursuit to be fatigue free.
I'm in the final stages of preparing everything for the Chronic Fatigue Diet Study, I hope to be able to start before the end of March 2015. In the meantime, if you're interested in joining the CFS community you can register anonymously and receive your member ID. You could then get started at any time by filling out the preliminary survey for the CFS community. This will assess your symptoms and experiences surrounding CFS/ME.
I'm excited to see what the future holds for the Mendus. I invite you to become a member and spread the word.