Status: The Study is Open Target Communities: Any Estimated Cost: $0
The Mendus Diet Study 2.0 allows members from any of our communities to investigate how diet influences their symptoms. It is now possible to follow specific types of diets (eg ketogenic) and compare the outcomes to say, your normal diet. You can test absolutely any diet you want. Participants can create up to 3 of their own symptoms trackers, along with our standard measures. As always, everything is free and you can participate from anywhere in the world.
Who can participate
The original Mendus Diet Study was designed around ME/CFS. We've grown a lot since then and I felt it was time to expand the study to accommodate all of our communities and any new ones that arise. Thus, the Diet Study 2.0 is open to anyone, even our healthy control subjects or new comers wishing to test specific diets and contribute to our database.
How Does it Work
First you need an anonymous ID, specific to your community, so that we can keep track of your data. You'll include it whenever you submit data and use it to see your ongoing results. Once you have an ID you'll need to setup your study. This involves telling us what kind of diet you'll be testing and setting up your customized trackers. And that's it, you can begin your testing. This involves submitting daily symptom ratings, or, daily symptom ratings along with detailed diet tracking info (eg of nutrients). More detailed instructions can be found here.
As your data accumulates you'll be able to visualize what's happening in the Results section. If you're submitting detailed dietary info you may be able to see if a particular nutrient influences your symptoms. If you're testing a ketogenic diet perhaps your fat to carb ratio or ketone levels predict changes in fatigue. What you'll be able to see will depend on what you include as measures in your study. We can discuss those details if anything is unclear.
Your data will also be added to the group results allowing us to assess, as a community, whether certain diets should be recommended or not. For example, a ketogenic diet has been proposed as helpful for both ME/CFS and narcolepsy. However, neither of those claims have ever been formally tested, that I'm aware of. Together we may be able to provide those answers.
Who is behind the project
Mendus.org is an independent, online, research platform run by myself (Joshua Grant). I'm a scientist, more specifically a neuroscientist, and created Mendus to try to solve my own issues with chronic fatigue syndrome. The website is funded (or not!!) by small something called affiliate marketing. When members' like yourself get to your favourite online shops through links on our shopping page we receive a small referral commission, at no expense to you.
Why Am I Doing This?
There are scads of websites claiming that diet X or Y cures this or that but actual evidence is rarely provided. The Mendus Diet Study 2.0 aims to let you test those claims. I'm offering patients a way to test, for themselves, the effectiveness of any diets they're interested in. The data is then pooled to allow us to determine, together, whether these diets help specific disorders or not.
I'm doing this because I'm sick and want to get better. And, because I'm tired (literally) of my life passing me by. The expression 'you are what you eat' is a powerful one. Every muscle, every cell, every brain and organ has to be made of something. All our bodies have to work with is what we feed them. Bad diet may not cause all disease and disorder but it certainly plays a huge, and ever expanding role (link to microbiome blog). If I can help a few people feel better it would lift my spirits as well.
Is it safe to share my data?
The honest answer is that there is no such thing as completely safe data online. We take a different approach at Mendus. We deliberately avoid asking for a lot of personal identifying information. We never ask for names or addresses and if you're concerned you can even register without an email address, though we don't recommend that. So how is your data kept safe? By making it difficult (or impossible) to link specific data with a specific person. Could your data be accessed? Yes, it is possible. Otherwise it would be difficult to allow anonymous users to see their own data. However, if it isn't possible to link any particular data to you than your risk is minimal. Ultimately, if you are concerned it is best to not share data but that means not participating.
I currently run Mendus single handedly. You can contact me anytime and I'll personally reply to any questions you may have. My work here is 100% voluntary and amounts to more than a full time job. You can support the cause (for free) simply by getting to the online shops you use through our links. Check out the Shop 4 Mendus page if you'd like to ensure we survive.
The Study in Detail
This form gives a short review of relevant scientific studies, discusses potential risks & benefits and gives an overview of the project.
This form provides details on how to use a diet tracker to collect the information we need about the nutrients you consumer.
Mandatory Measures Optional Measures
General information about the study can be found in the 'Project Information Form' while the 'Study Guide' explains how to actually complete the study.
Uploading Diet Data
You can evaluate various diets in this 'study' with or without actually keeping track of what you eat. Keeping track and sharing your diet data will give you a lot more information though.
As of 2017 we're setup best to handle Spark People diet tracker data. But we're open to integrating other data as well. You can attach files above or email them (firstname.lastname@example.org)
To get your Spark People data file to us:
On SparkPeople website
On Nutrition Page
Scroll down to Reports
Hover over More Reports
Daily Nutrition Report
Set dates & Run Report
Scroll down to Export Data to File
Add your ID to the file
You should make ratings of your symptoms and custom measures every day if possible. The only way to enter these data is through our form. Ratings can be entered 'after the fact' as you'll be required to specify the date of the ratings. Thus, if it suits you, you could keep track of your ratings on a note pad and enter them all at once, perhaps once a week.
Be sure to enter your ID, the date (of the ratings) and the diet to which they apply, EVERY time.
To make a rating simply drag the small white circle left or right to change the value. All default measures have a scale from 0 to 10 except sleep hours.
If you created your own measures these will have different scales and will require you to type the value into the box. Your custom measures will only appear after you've made the default ratings.
How to Download Your Data
Type your ID in the small box (e.g. CFS123456)
Click "Create Download URL"
Copy the text in the long box
Paste that into the address bar of your internet browser
It may take a few minutes but a text file will automatically download.
The downloaded file can be opened in many programs including Microsoft Excel, Google Sheets, SPSS and any text editor. All of your data from THIS study will in the file. To get your data from other studies you will need to follow the same procedure on that study homepage. If you download your data again in the future any new entries will be added to the older ones. That is, you'll always be downloading your entire dataset.