Putting Health and Research Into the Hands of Individuals

By Greg Macpherson –

Just as crowdfunding has changed the financial world, crowdsourcing has changed the worlds of information gathering and content creation, and citizen journalism has altered the media world, citizen science is helping to revamp the areas of health and scientific research.

Mendus.org, is an innovative, free platform where individuals seeking information about their health, symptoms or chronic conditions can share experiences, interact with research scientists, generate research studies and actively explore answers to their questions with like-minded people.

Created and managed by Joshua Grant, a neuroscientist with Chronic Fatigue Syndrome, Mendus.org is an anonymous platform that brings research within reach of those exploring their own health. “Realizing there were likely thousands of people like me trawling the internet for answers, all asking the same questions, I decided to build Mendus, to pool our resources and take matters into our own hands,” he explained. “There are no recognized treatments for CFS, rather than just take a vitamin or supplement willy-nilly. I wanted a better way to assess the effect on my symptoms.”

“Unlike traditional research, Mendus focuses foremost on the individual. Our members are organized in disorder-specific communities where we can chat about and eventually design little do-it-yourself studies,” explained Grant. The goal is to have members propose, help design and then participate in studies they want done. Once established, a study remains open for anyone to complete, whenever they please, from anywhere in the world.

Individuals can download or see their results at any time using their anonymous IDs. The data provided by members are then pooled and statistically analyzed by Grant and presented to the community; addressing the community’s questions. “Mendus empowers patients by giving them the means of assessing what they think might work or not work, specifically for them,” noted Grant.

Currently, Grant guides the discussions and handles the scientific aspects but hopes to have other researchers join the endeavor in the future. “There is a new age in health management upon us.  Empowered patients are turning to the web to seek their own management strategies for a vast array of chronic conditions.  Powerful tools exist for analyzing patterns in symptoms, lifestyle, behavior and environment.  To maximize the benefit of these tools, Mendus was created as a research lab for patients where the information is scientifically analyzed, interpreted and integrated with existing knowledge,” according to Grant. “To date our studies have been fairly simple but ultimately we’re limited only by the imagination of our members.”

Active communities at Mendus include: Chronic Fatigue Syndrome, Fibromyalgia, Multiple Sclerosis, Pernicious Anaemia/B12 Deficiency and Narcolepsy.

For more information and to view a study visit: www.mendus.org.

Greg Macpherson is Chief Executive Officer of MitoQ Ltd. He completed a Bachelor of Pharmacy at University of Otago School of Medicine in 1992. He has been a partner and board member of a pharmacy chain associated with one of NZ’s leading retailers. Currently he is a shareholder and director of Pharmacy Direct, NZ’s leading online pharmacy and is CEO at MitoQ Ltd.