Clinicrowd Mannitol Results: A modest criticism about the presentation of data

[ElliotGreen]

The results they present are confusing. They say only 78 people out of over 1000 who registered consumed Mannitol more than 6 months.

They say 56% report of improvement in their Parkinson’s grade and symptoms.

But then they say

90% regained sense of smell;

86% improved their facial expression

81% improved their gait

etc.

I think these numbers are presented in a confusing fashion. When I first saw this, I assumed that 90% of people who took mannitol for 6 months regained their sense of smell. WOW! That would be massively impressive. But that doesn't make sense.

When I stop and think about it, I realize that what they actually are probably saying is this: 90% OF THE 56% WHO SHOWED ANY IMPROVEMENTS AT ALL regained their sense of smell, or ACTUALLY 50% of the 78 people. SO NOT REALLY 90%.

And that also leaves out potentially hundreds of people (a large percentage) who may have stopped taking mannitol before 6 months because they saw no noticible benefits.

My main reason for writing is to say that anyone who casually glances at the figures on for Clinicrowd may get an inflated sense of the efficacy of mannitol.

I am not saying mannitol isn't good or useful, it may very well be. This is more a plea for a more clear and balanced way of presenting the results.

[ElliotGreen]

I am referring to this post: healthunlocked.com/parkinso...

[Astra7]

I didn’t report my findings to the website as it was too difficult to use.

I think mannitol is v helpful for mental clarity and smell, but it really causes a lot of wind😟

[KERRINGTON]

Clinicrowd was a waste of time for me. I spent lots of time filling out survey forms, only to get no info, no direction, no instruction....couldn't even contact anyone for help.

[Xenos in reply to KERRINGTON]

Same here - Too bad, for CliniCrowd was an excellent idea.

I still take mannitol though...

[jeffreyn in reply to Xenos]

Me too. It's just so easy to add a level tablespoon of mannitol to my morning coffee.

I also still fill in the survey at the beginning of each month. It doesn't take very long.

[KERRINGTON in reply to Xenos]

Me too !

[ElliotGreen]

Hey folks,

I WAS A BIT TOO CRITICAL IN MY ORIGINAL POST. This article spells out the results better:

scienceofparkinsons.com/201...

I was also wrong in my interpretation.

When they say 90% of people had improved sense of smell, they actually mean 90% of people who reported problems with smell in the first place saw improvement. [Of the 78 people who persisted for 6 months.]

So while, I do think they could have reported their results a bit more clearly, I do think they were reporting them fairly and accurately.

[Hidden]

link.springer.com/article/1...