Parkinson's Movement
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Results of Mannitol Repository from Clinicrowd

Dear Friends, some of you were very helpful in filling up the repository about the effect of Mannitol on Parkinson's disease. It took us a while to release the results because we came to the conclusion that we need results that are more then 6 months of follow up. The reason is that Placebo effect is very strong on PD, and while not many pharma companies will take this under consideration, we wanted to be conservative.

Please note that the Mannitol research is based on tests conducted on mice. The test on mice lasted 4 months, which is equivalent to 4-6 human years. So patience is needed in order to verify if Mannitol has the same effect on humans.

Clinicrowd is a crowd-based platform dedicated to collect and analyze real evidence data from patients who choose to take nutraceuticals which are approved by the FDA as safe for human consumption. Unfortunately, there is no economic incentive to test these substances in official clinical trials, although they have the potential to help patients.

CliniCrowd has launched a generic, broad, on-line, protected platform which investigates and validates scientifically-based, safe, affordable and easily-accessible solutions for diseases that, to date, are not being researched due to lack of financial incentive. These solutions, can lead to a healthier and better life for individuals with various ailments and medical conditions, including, Parkinson’s disease, Alzheimer's disease and more. The Platform provides analytics and shared insights allowing the individual participant to better manage her/his personal symptoms; improving and impacting the lives of all those who suffer from the same illness. CliniCrowd is not a pharmaceutical company nor a medical consultant. We see our role as providing data and connecting the dots to provide evidence, backed by a wealth of data. By the Crowd - For the Crowd.

As first proof of concept, to leverage the experience of the Crowd, CliniCrowd launched:

Mannitol for Parkinson’s patients - Early Results are Promising

Since the launch of the platform in 2017, Parkinson’s patients from 42 countries worldwide decided to test Mannitol through CliniCrowd’s platform. While more then 1000 have filled a survey at least once, only seventy eight of them who consumed Mannitol more than 6 months, are included in the results:

To date, 56 % report of improvement in their Parkinson’s grade and symptoms despite the disease progressive nature. 7% reported no change in their situation and 37% showed deterioration in their status. i.e 63% of the patients reported either an improvement or no change after 6-15 months with Mannitol, which is an encouraging finding based on the continued progressive deterioration of PD.

Best improved:

90% regained sense of smell;

86% improved their facial expression

81% improved their gait

80% had less hallucinations.

78% showed improvement in Scale of Energy and Vitality

77% showed improvement in their muscle cramps

For further details, on this and other indications, join our crowd-based surveys at: clinicrowd.info

A few important notes:

CliniCrowd does not provide any medical advice.

This is not a clinical trial, this is based on reports made by patients who chose to report back on the status of their disease while taking Mannitol in addition to the regular drugs prescribed by their Medical Doctors.

CliniCrowd does not sell Mannitol and is not affiliated with any Mannitol manufacturer.

The results are strictly based on patients who decided to take Mannitol and report back to the community.

The reports are based on surveys similar to questionnaires which are frequently used in clinical trials.

32 Replies
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Ranico, thanks for the feedback. Any consideration of clinicrowd doing the same with thiamine?

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Great idea !!

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MBAbderson

Thiamine protocol is patented according to Dr Marco ( Dr. Costantini’s co-worker) .He said that in an earlier radio show.

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I don't know anything about patents, so I wonder how do you patent a regime of taking a vitamin? Does that mean if we take certain doses at certain frequencies we can be stopped?

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I think they can stop or even ask for punitive measures against people or companies who violate their intellectual property rights in this case the Thiamine treatment if it has been properly patented.

healio.com/orthopedics/busi...

blog.patentology.com.au/201...

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Apparently, in the United States a 'method' can be patented, but not in Europe. In Europe, “patents shall not be granted in respect of methods for treatment of the human or animal body by surgery or therapy and diagnostic methods practiced on the human or animal body.” I should patent the method by which you can eat a McDonald's cheeseburger, i.e., anyone who eats it with both hands is going to have to pay me, but eating with one hand would be free.

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You are right.Beautiful analogy.

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I will appreciate it if you could move this discussion to another thread. You are confusing patients that are looking into mannitol. The target of Clinicrowd is to give information based on real PD patients and not rumors and interested parties, so i will appreciate it if you move this threat to another place.

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We are looking closely at Thiamine experiments, there is no data so far from reputable independent institutions. Also, we are limited in resources and since the Mannitol results are very encouraging, we believe we should focus on getting more PD patients data on Mannitol such that the data will show more variety of patients.

Again, Thiamine is not the subject here, we would like to get to as many PD Patients who decided to try Mannitol for a long period of time.

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Is the study of Mannitol alone or combined with other supplements and/or meds. Thx

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Would like to know more why people stopped taking Mannitol and in what way it made their condition worse. 37% is a large number of people with negative experiences.

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Dear Shelly. You have to understand that without Mannitol, nearly 100% have negative experience. PD is a deteriorating disease, it never gets better. If our findings can be confirmed with much larger groups or a clinical test , then this would be the most important news for PD in years.

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People probably stop taking mannitol because of the bowel issues - gas and diarrhea. Just a guess.

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I think bassofspades is right. If you cut back on dosage If you are experiencing gas or diarrhea and then slowly increase until you find the best dosage for you the potential long term benefits seem significant. In the short term zero constipation and increased sense of smell.

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the dose for my weight (106.5 kg) is probably 2 tbsp. I cant handle more than 1. Ive been on it over a year now.

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Have you guys reported this to the repository ? If you did not we can not know. We did get complaints about Mannitol but not people usually get use to it after 2 weeks or find the right dosage. We need your reporting and cooperation to know the true effects.

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yes i did

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Thanks, I will ask the IT guys to run a query about reports on Mannitol bowel issues and add to the report.

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I thought that the intolerance issue of gas and bloating was dealt with by adding the alpha galactosidase/Beano to the mannitol just as in the Syncolein product that sells for significantly more than mannitol alone, even though the alpha galactosidase is relatively cheap?

Art

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This one is almost one fourth the cost of Beano with the same active ingredient, but twice as much per capsule:

walmart.com/ip/Equate-Gas-R...

Art

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Thanks easily.

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Is it fair to conclude that if 1,000 people filled out a survey at least once, but only 78 people reported taking it for 6 months, that an overwhelming majority did NOT find mannitol beneficial?

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I would imagine an overwhelming majority found the Clinicrowd website a pain in the ass to use. I still think some gain some benefit from Mannitol, for some period of time, - it certainly helped me to begin with though I feel there is some progression going on now. I think a small minority benefit and I would recommend it short term to beat constipation at the very least.

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please do remember that the mice that got over PD, took it for 4 months, which is 4-6 human years. The benefits are in long term, this is why we only took results of patients that took it for more then 6 months, to eliminate the Placebo effect.

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I really appreciate your study and I'm all for whatever works, but unless I'm missing something, the most significant thing which stands out to me is that at least 922 people quit taking mannitol within the six month trial period and/or they didn't find it helpful enough to report their results. I hope I'm missing something.

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Not getting patients to follow up is our biggest failure. There could be 3 reasons for this:

1- We failed to communicate that Mannitol is not a magic recovery from Parkinson's and it takes time (if we compare to mice - 4 to 6 years). Therefore those that did not experience immediate improvement stopped taking mannitol and dropped from the experiment.

2-Our website did not perform well, and we know about a lot of people that continue to take mannitol for a long period of time, and it does good to them, but they gave up on the website.

3- It did not work for them. My only remark on this would be, that if it did not work for them we would see them following up for 6 months and then quitting. But nearly most of the people that quit, stop after only 1 report. Which means they did not try for a longer period as required, or are doing good and just do not report, or doing bad and not reporting. We do not know. It is our failure that we could not find the way to encourage people to do the reporting.

Our system is a voluntary system. No one is getting paid like in clinical trials, so to keep people incentivized to keep reporting is tough.

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Thank you very much for the thorough and thoughtful reply. This all happened before I was diagnosed, but I appreciate your efforts very much.

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Please note that the most substantial improvement was in facial expression and regain of sense of smell that happened to a very high % of patients. If you decide to take it, you need to commit for you self more then anything ...and only then it will be nice if you report back :). Good luck with your battle, i think there will be a lot of good news in the coming 5 years.

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Actually, I see from one of your posts that over FOUR THOUSAND patients were testing mannitol. Only 78 actually saw it through? Again, I want it to work, but those numbers are very discouraging to me.

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No Jim, we did not have four thousand people reporting on taking mannitol. We are giving exact numbers as in our website. Again, people that expect miracles within few months and stopped taking mannitol is not something that should be count as failure.

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Where can I find out about calculating the dose ? Thanks

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