DIY Medical Research Studies

Mendus: How the Internet is Revolutionizing Medical Research Studies – by Natalie Rodriguez  

Just as crowdfunding has changed finance and citizen journalism has transformed the media, the internet is altering the face of medicine and healthcare.  

A striking example of that is Mendus (http://www.mendus.org), a website where members can design their own research studies.

Joshua Grant’s journey, seeking answers to his own health issues, led him to develop the site.  

After graduating with his Bachelor of Science from Dalhousie University and Ph.D. from the University of Montreal, neuroscientist, Grant headed to Germany to work at the prestigious Max Planck Institute.

At about the same time his health began to deteriorate. Eventually, he was diagnosed with Chronic Fatigue Syndrome (CFS) a mysterious disorder, without an accepted treatment, that affects many bodily systems, including the brain.

After wrestling with symptoms such as ‘brain fog’, post exertional malaise and irritability, which Grant described as “debilitating” he took matters into his own hands.

To wade through all the untested ‘natural’ treatment possibilities, and possibly even help cure CFS, Grant started up his company, Mendus, a website where members can design their own research studies.

Mendus studies are based on members’ interest and requests, ranging anywhere from testing the influence of the sugar D-Ribose to heart rate monitoring and potentially even genetics. Once launched a study remains open indefinitely, slowly collecting data.

Mendus is a do-it-yourself resource. Users are grouped into communities based on disorder (like CFS) and can suggest study ideas, usually to test the effectiveness of a treatment. As they complete these do-it-yourself studies the community begins to learn what works and what doesn’t.

Participation in Mendus studies is anonymous, yet this one-on-one gives the experience a personal touch, adding to the fact that members can see and download their own results.

Recently, Mendus completed a 142-person, double-blind, placebo-controlled, crossover trial (with two different disorders), something that would have most likely cost a few hundred thousand, at minimum, and taken years to complete if run in academia or by the pharmaceutical industry.  

Here is the study referred to:

Did MitoQ Mend Us? A Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS) CoQ10 Trial – Health Rising | by Cort Johnson | Aug 8, 2016

Mending Us

Mendus is the brainchild of Joshua Grant, a neuroscientist with chronic fatigue syndrome (ME/CFS).  

Joshua looked around and saw a mountain of possible  treatments with nothing other anecdotal evidence to recommend them. Given that he couldn’t expect clinical trials to assess how effective even a fraction of them were, the future looked like a lot of expensive trial and error.

There had, he thought, to be a better way, and so he created a platform called Mendus that patient communities can use to produce their own clinical trials

Mendus takes off on the “quantified-self” movement in which individuals use devices that measure activity levels, heart rate, heart rate variability, sleep, etc. to monitor their personal health.  MENDUS takes that movement to the next level to produce the “quantified-community” projects that allow entire communities to get statistically relevant information on treatment possibilities.

Is Mendus producing full-fledged clinical trials? Mendus can, in fact, produce placebo-controlled, double blinded trials (see below) but they’re not quite full-fledged clinical trials.

They do, however, produce the best data we’re likely to ever get for most of the treatments ME/CFS and FM patients try.

When enough people enter into a trial it becomes active.

The trials essentially never end; as new people enter a trial and provide new data the data stream becomes more robust and gets re-analyzed.

Twelve ME/CFS and FM trials containing over 300 patients are now active on Mendus.

The MitoQ Chronic Fatigue Syndrome and Fibromyalgia (FM) Trial

With 144 people contributing data the MitoQ ME/CFS and FM study is the largest MENDUS trial to date. MitoQ is an amped up form of CoQ10, an essential mitochondrial factor and antioxidant. Several studies also suggest it may be helpful in ME/CFS or FM.

Studies suggest that mitochondrial problems may be present in chronic fatigue syndrome (ME/CFS) and/or fibromyalgia (FM).  Reduced blood CoQ10 levels, for instance, have been found several times in FM.

Conclusions

The Mendus study validated past study results in fibromyalgia; CoQ10, in this case in the form of the MitoQ,  did significantly reduce pain levels and modestly increased working memory. The evidence for CoQ10’s usefulness in fibromyalgia is increasing.

CoQ10 bombed out in the ME/CFS group. In fact, MitoQ was associated with a slightly reduced quality of sleep.   Given reports of low CoQ10 levels and ATP production  in ME/CFS the findings were somewhat surprising.

Kudos to Joshua Grant for putting this trial together, to MitoQ for being willing to put their product on the line in such a visible way and to all who participated.

Read the scientific paper here.


Also see

The rise of citizen scientists and patient initiated research – KevinMD.com

Whether you call it Health 2.0, Medicine 2.0, or e-Health 2.0, the Internet is changing medicine in ways that challenge the status quo.

This article explores how a group of amateurs who call themselves “health hackers” and “citizen scientists” are trying to use the Internet to connect with other patients, run experiments, and conduct clinical trials on their own diseases.  

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