Help with CoQ10: Lots of uncertainty about... - Cure Parkinson's

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Help with CoQ10

Specterishot profile image
7 Replies

Lots of uncertainty about CoQ 10 ...is it really helpful in PD?? Can some of you chime in on your thoughts and please let us know which form is best.

Thanks!

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Specterishot profile image
Specterishot
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7 Replies
MBAnderson profile image
MBAnderson

The literature (studies) are mixed. I don't take it.

Esperanto profile image
Esperanto

In an update this year from her earlier 2017 research, Laurie Mischley states now that CoQ10 has been formally studied in PD clinical trials based on biological plausibility and pre-clinical evidence. The study conducted an analysis using a subjective outcome measure and found that CoQ10 was associated with improved outcomes in a cross-sectional analysis.

mdpi.com/2072-6643/15/4/802

Impact of supplements on PD
kevowpd profile image
kevowpd in reply to Esperanto

The same study that ranks ginko biloba as the top PD busting supplement because nineteen people feel good and take it at the same time?

Think I'll defer to the n=600 phase 3 study results:

jamanetwork.com/journals/ja...

BTW: if anyone should have cause to be skeptical of Mischley's measurement approach, it should be you, given that you managed to score 660 and then a week later scored 286. How can the score possibly be a meaningful proxy for 'progression' or 'underlying disease status' when your score reduced by 400 in a week?? And you're switched on. How do those with slightly (or moderately) impacted cognition deal with the survey?

healthunlocked.com/cure-par...

Esperanto profile image
Esperanto in reply to kevowpd

The research study you mentioned from 2014 was taken into account in the Research Article (2017) titled "Role of Diet and Nutritional Supplements in Parkinson’s Disease Progression" by Laurie K. Mischley. At that time, it was one of the reasons why CoQ10 was not yet recommended.

researchgate.net/publicatio...

Since then, new research results have emerged that show a significant improvement in PD symptoms. These findings are not only based on subjective data from PRO-PD, where CoQ10 contributed to a considerable group of participants (n = 315). However, it's important to note that Dr. Mischley herself acknowledges the limitations of the data, especially with certain supplements. In her own words, "Another limitation of this dataset is that some of the supplements were only being used by a small number of individuals, such as NAD+ (n = 19, 1.8%) and Ginkgo biloba (n = 16, 1.5%); statistical significance in these smaller samples should be interpreted with caution as skew and kurtosis can increase statistical significance inappropriately. This observational study has inherent weaknesses in the ability to control for quality of dosing, active ingredient quality, and regularity of supplementation from recall bias and the self-reported nature of this study. In addition, nutraceutical brands are unregulated and therefore pose weaknesses in the ability to accurately determine the true effect of the nutraceutical. These data should be interpreted with these inherent weaknesses in mind [39]."

I’m still very excited about the personal measurements of the PRO-PD method.It is of course subjective because you give a judgement about your situation yourself, but it provides an indication of MY pain and limitations related to your PD symptoms at the time you take the test. It is a snapshot and not a reflection of your situation over the past week or month. As you may have experienced, PD symptoms can vary greatly from day to day, which can naturally affect the score. That's why it is recommended to take the test as often as possible. My latest result today is 165, probably because yesterday I returned from sunny Spain... Currently, it is snowing and around freezing point in the Vosges. I suspect that next week's result might double ;-)

It is valuable to observe these fluctuations as well. I van see what works positively and what doesn't and shows me the huge improvement from over 1000 to 165 in 15 months! It may mean that I need to seek the sun more often and go hiking in the mountains during winter. By the way, you don't need PRO-PD to realize that...

Router_ profile image
Router_

thelancet.com/journals/ecli...

seems helpful at least in MSA, whether that can be translated to being helpful in parkinsons is a more difficult question

Ethin profile image
Ethin

From what I remember reading a while ago, it is at best effective for specific genetic PD conditions, but not PD at large.

kaypeeoh profile image
kaypeeoh

Dr Shallenburger has said it helps mitochondrial function.

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