At Mendus a community is a group of people who share something (typically a disorder). For example, we have a Fibromyalgia community. Each community has a unique identifier which starts members' IDs (for example FM for fibromyalgia). Each active community has it's own homepage (under the communities tab). On the homepage are links to the community's Studies, Results and to the Forum and a preliminary questionnaire if available. We envision communities arising that are not necessarily disorder-related. For example, pregnant women may wish to form a community.
Study (sometimes referred to as a project)
Studies at Mendus differ from traditional research studies. First and foremost, each individual completes the study on their own following a guide. They are completely responsible for their own participation and outcomes. Members are also involved in every aspect. That is, they can propose the study, help design it, suggest measures we could include and then once it is built (by us) they can also participate in the study. Everything is done online so you can participate from anywhere in the world. Studies do not close but remain open and accumulate data slowly over time. Data is automatically submitted to a group database and is available at all times to the individual for viewing or downloading.
Frequently Asked Questions
Q: What does Mendus do?
A: We bring individuals together and provide them with a platform to actively discuss, and then test, various treatment options. Disorder-specific communities propose 'studies', such as testing the influence of a vitamin on their symptoms. When there is substantial interest in a project we will create do-it-yourself protocol for anyone to follow. We provide statistical analyses and graphics! This allows patients to assess things they're interested in more systematically. A more complete answer can be found on the Mission page.
Q: Is it free to join Mendus?
A: Yes it is. It's free to join, it's free to participate in community projects and we hope it will always be that way. Note that if you participate in a study you will need to get your own materials (i.e. whatever it is you're testing).
Q: The disorder I'm interested in is not listed under the communities tab, what do I do?
A: At the bottom of the communities tab is an entry called OTHER DISORDERS. Here you'll find a list of disorders that are not yet active but which you could activate (by registering and selecting that disorder from the dropdown list). If you don't see the disorder in the list, no problem. Just send us a request from the contact page and get your community started as soon as possible. In the mean time, spread the word, and populate that community!
Q: Do I have to participate in a study if I join Mendus?
A: No. Even without registering you can view all the discussions and see the project results. Registering simply gives us a way to track all the data, from project to project, and anonymously present all of the results online. To participate you must register.
Q: Will Mendus provide me with the materials for the studies I'm involved in?
A: No. If the project you're interested in involves testing how a supplement works, for example, it is up to you to get that supplement. We can provide the platform, organize the communities, offer advice from a scientific perspective, build the necessary infrastructure to implement a study and analyze and help interpret the results but, it will always be the responsibility of each individual to carry out their own 'self-experiment'.
Q: Should my doctor be aware of my activities with Mendus?
A: Absolutely. We urge all members to keep in steady contact with their physician. The projects we run, for the most part, will involve things that you could have tried yourself at any time, such as testing the influence of various supplements on your symptoms. While these 'interventions' are by and large harmless, caution should always be taken.
Q: Is Mendus really anonymous?
A: Yes. We've tried to remove as many personal identifiers as possible. We never ask for names and you can now register even without an email address. This was done intentionally to protect the identities of individuals who wish to pursue their health-related questions with us. If you register without an email address, we suggest you immediately send us an email with your newly acquired ID. This will allow us to help if you misplace your ID and yet keep your ID and email address separated in our files. After registration the only way we distinguish one person's data from another is using those IDs.
Q: Will you share my email address with other people/organizations?
A: Nope. Period. We're here to explore our health-related issues, not sell email addresses. Further, with our new registration procedure, if you're concerned, you can register without an email address.
Q: Why are there ads on Mendus?
A: Currently there are 'affilate' ads on Mendus. These are links which will take you directly to the company or shop featured on the ad. If you purchase anything from those shops Mendus receives a small commission for referring you. This is how we hope to pay for the costs of the website. This is a procedure being adopted by many charity organizations. These ads could be for products we're testing, or anything (see the Shop 4 Mendus page). If you would like to help make sure Mendus survives shop through our links. It doesn't influence the price at all. There is a more complete answer here.