Is the Mendus Mitoq Study a New Way to get More Research?

[Jenny TipsforME]

What is more interesting than the results of this study is the way it was done. It is essentially a randomised control trial for free. Could more research be done like this?

The influence of Mitoq on symptoms and cognition in fibromyalgia, myalgic encephalomyelitis and chronic fatigue:

Fibromyalgia (FM), myalgic encephalomyelitis (ME) and chronic
fatigue syndrome (CFS) are disorders with similar symptom-
constellations including pain, fatigue, cognitive problems and sleep
disturbance, among others. These multi-system illnesses have many
known abnormalities, few reliable treatment options and unknown
causes. Oxidative stress has been linked to disorder severity,
suggesting anti-oxidants may be of benefit. Coenzyme Q10 (Q10) has
been shown to improve symptoms and biomarkers of FM, and
ME/CFS if taken in combination with another coenzyme. However,
Q10 is poorly absorbed by mitochondria. MitoQ is a mitochondria-
targeted Q10 analog with superior absorption and accumulation by
mitochondria in vivo. The current study tested the effect of 6-weeks
of daily oral MitoQ (20mg) on FM and ME/CFS with two
randomized, blinded, placebo-controlled crossover studies. A third
open label cohort contributed data but did not receive placebo.
Results suggest MitoQ may reduce pain and increase working
memory in FM. Further investigation in a more controlled
environment is warranted

http://www.mendus.org/#!mendus-reports/x53z8

 

[Jenny TipsforME]

Conclusion
The mitochondria-targeted supplement MitoQ appears to offer the
potential to reduce pain and increase cognitive function in patients with
fibromyalgia. There was no indication of positive effects in ME/CFS
patients unless they were aware of taking the active supplement. The
present report was an experiment in more than one sense of the word.
The dual cohort trial was run completely online and outside of both
academia and pharmaceutical/nutraceutical laboratories. The trial was
initiated by patients, graciously supported by the proprietor, designed and
analyzed voluntarily by a research scientist/patient and carried out by the
patients themselves. There were no costs involved above that of the
supplements/placebo. The project is a proof of concept. Assuming
limitations are acknowledged, sophisticated research designs can still be
implemented to reveal important findings quickly and with minimal cost.
The intention of the study was two-fold. First, as with all projects
initiated by the website Mendus.org, the protocol was designed primarily
to allow individual patients to test for themselves, whether a given
treatment option (e.g. MitoQ) is effective, specifically for them. This
report reflects the second aim; to pool as many of these N=1 studies
together as possible to provide an initial indication of whether the
supplement was effective or not. It is hoped that these individual patient
efforts can inform future lab-based work that can employ more rigorous
methods.

 

[Snow Leopard]

This is a good idea actually, to test the effiacy of the various supplements that are common. The key is still to have good screening, gather sufficient data elements so that the results can be extended beyond just the patients included in the study.

 

[Jenny TipsforME]

@Snow Leopard in a sense it is just lots of n=1 studies knitted together. As a participant it is better than conventional research as you don't have to leave the house and you get your own results.

When you sign up to Mendus you do surveys which if I remember rightly were written by Leonard Jason for the ME/CFS folk (should be fairly robust).

It needs to be treated as a different way of doing science, not the same as University based studies. It is probably very good as a Phase 1 study. When there are particularly interesting results it could be used as evidence for a more conventional study.