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A discussion on yasko forum about documentation of success stories

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
To the original poster: You probably know this already, but the best evidence is taken from published peer-reviewed double-blind, placebo-controlled studies, also known as Randomized Clinical Trials (RCT). The worst evidence, as you know, is anecdotal. Either there are published studies or not. If there are not, then move on.

Many people here don't wait for published clinical studies because they are very anxious to become well again. That's a personal choice. Ask the website owner if they have any published RCTs, then make your decision.

Best of luck to you.
 

caledonia

Senior Member
There is only one study done on methylation protocols that I know of, which is the one Rich Van Konynenburg did on his Simplified Methylation Protocol. It's a simplification of the Yasko protocol. Unfortunately, Rich passed away last year, so there hasn't been a followup study done, although Dr. Nathan was supposed to be carrying on Rich's work. The participants did show improvement, some of them remarkable.

One reason there aren't more studies is because this field of study is extremely new. The Human Genome Project was only completed 10 years ago. Consumer availability of SNP testing is only about 5 years old. It takes about 17 years for a treatment like this to become mainstream/be backed up with numerous studies and so forth.

In 17 years I will be an old lady, so I prefer not to wait for absolute solid proof. Nothing is really sure in this life anyway. I'm sure many people here feel the same way, so they're choosing to be pioneers and try out methylation now.

So if you're not the pioneering type, and need to have studies and proof before you try things, you're going to be waiting awhile. Unfortunately, that's just the way it is.
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
yes i know she s not an MD. but her therapy is anyway a cure. So let me understand, if i'm not obliged to bring any proof i can as well mix water with sugar and sell it for 1000$ a liter claiming that it could makes you get younger of 20 years. Is this allowed in USA?

If you got the wording right.

This is legal definition of a dietary supplement, from the US Food and Drug Administration:

"Congress defined the term "dietary supplement" in the Dietary Supplement Health and Education Act (DSHEA) of 1994. A dietary supplement is a product taken by mouth that contains a "dietary ingredient" intended to supplement the diet. The "dietary ingredients" in these products may include: vitamins, minerals, herbs or other botanicals, amino acids, and substances such as enzymes, organ tissues, glandulars, and metabolites. Dietary supplements can also be extracts or concentrates, and may be found in many forms such as tablets, capsules, softgels, gelcaps, liquids, or powders. They can also be in other forms, such as a bar, but if they are, information on their label must not represent the product as a conventional food or a sole item of a meal or diet. Whatever their form may be, DSHEA places dietary supplements in a special category under the general umbrella of "foods," not drugs, and requires that every supplement be labeled a dietary supplement."
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
yes i know she s not an MD. but her therapy is anyway a cure. So let me understand, if i'm not obliged to bring any proof i can as well mix water with sugar and sell it for 1000$ a liter claiming that it could makes you get younger of 20 years. Is this allowed in USA?

Yes, this is allowed. Here is a website selling salt mixed with water, making a lot of health claims:
http://www.asea.net/
 

trollo

Senior Member
Messages
153
Location
Italy
To the original poster: You probably know this already, but the best evidence is taken from published peer-reviewed double-blind, placebo-controlled studies, also known as Randomized Clinical Trials (RCT). The worst evidence, as you know, is anecdotal. Either there are published studies or not. If there are not, then move on.

Many people here don't wait for published clinical studies because they are very anxious to become well again. That's a personal choice. Ask the website owner if they have any published RCTs, then make your decision.

Best of luck to you.


You seem to deliberately simplify the issue. Yes, there aren't RCT at disposal, and we can't wait 17 years. Yes anecdotal prooves are the worst. But there are a lot of different types of anecdotal prooves, lot of shades between 'nothing' and a 'Randomized clinical trial'; there are reasonably well documented anecdotal stories, and there are pointless stories that everybody can write, me , you. There is a lot of diffference between them, even if the value of a well conducted study is not comparable.
 

Violeta

Senior Member
Messages
2,895
Trollo, I found the same sort of diversion about actual progress at two other sites that are providing solutions to autism. One site has 10 videos, (chlorine dioxide) and one that I watched was a father with two children on the spectrum. It's very long, and you come away thinking wow, but then later I realized that he said he did NOT use the protocol on his daughter who is better now, and he said he's looking forward to see what will happen with his son.
I stayed at another fourm which pertained to limiting oxalates for quite some time, and so I saw people with various diseases come and go. Watching people come and go and the answers they get is probably the only way to really be able to see if the protocol is working. I saw a lot of diversion from information that pertained to for example kidney disease just so that the person would focus solely on oxalates. Some people would come and after a while say, hold on, I just found out I have uric acid in my urine, not oxalates, but get totally ignored. If I asked questions I was told I was rude. It does seem that people are taking advantage of an opportunity and do not want anyone to disrupt it. They will use all types of mind games to work around anyone who starts to ask question.
I only read at Yasko's a couple of times. I saw a lady who was giving her child about 50 supplements throughout the day, but said she did not see any progress. It hit me that putting all that stuff into the body does not mean the body is going to start working correctly, and that it's terribly expensive, and that I couldn't do it, so I just left.
If no one wants to give actual visual proof of recovery, I would suggest to just watch and see. You can learn stuff along the way.
 

trollo

Senior Member
Messages
153
Location
Italy
Well the point is that i found this way of diverting questions highly suspicious... mind games is an appropriate definition of it.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
. You seem to deliberately simplify the issue. Yes, there aren't RCT at disposal, and we can't wait 17 years. Yes anecdotal prooves are the worst. But there are a lot of different types of anecdotal prooves, lot of shades between 'nothing' and a 'Randomized clinical trial'; there are reasonably well documented anecdotal stories, and there are pointless stories that everybody can write, me , you. There is a lot of diffference between them, even if the value of a well conducted study is not comparable.

I don't have any opinion whatsoever about Yasko. I'm following another doctor's protocol, not affiliated with this site or Yasko. Good luck with your journey finding what works for you.
 
Messages
10,157
Please note this thread will be closed until the Moderation Team has had a chance to review it.

Thank you. :)

The thread has re-opened.

Please note there have been a few posts deleted/edited on this thread. It's quite difficult to assess any situation where comments have been made on another forum and brought here and perhaps it isn't the best thing to bring issues from one forum to another.

One could argue about anecdotal reports all day long but respecting the experiences of others is important. It's also good to remember that a protocol that might work for some may not work for others. The best thing to do would be to debate the merits or disadvantages of protocols, research issues etc. and avoid personal comments.


Thanks for your patience.


Kina.
 

trollo

Senior Member
Messages
153
Location
Italy
Well there is no other advantage or merit in any protocol but the evidence of efficacy. It has no sense discussing a Protocol about other aspects because his reason to exist is to cure or considerably improve patient issues. Besides nobody of us is a researcher..
 

trollo

Senior Member
Messages
153
Location
Italy
Finally i received the response.
"As much as we would like to provide what you ask, we do not have such information available. The people who use Dr. Amy’s protocol do so because they have found something that they believe helps them and/or their child. I would suggest you take advantage of the resources available which would help you to make a decision as to whether or not the protocol can be useful for you and your cousin. Thank you."

I expected it, but i hoped they could have surprised me. "They have found something", basically it should be some kind of misterious X factor?
Basically it seems they are saying 'find something that you believe it helps you', so it's a matter of faith, everything is effective if you believe on it. Wow!
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Interesting use of the word "believe" in this response.:p

A word which should start waving warning flags to you, like mad!

She does not say the folk who use the protocol are helped, she says they believe they have found something which helps.
Then refers you back to "the resources available". :cautious:

In other words, "buy our pseudoscience, or leave us alone".
 

trollo

Senior Member
Messages
153
Location
Italy
Interesting use of the word "believe" in this response.:p

A word which should start waving warning flags to you, like mad!

She does not say the folk who use the protocol are helped, she says they believe they have found something which helps.
Then refers you back to "the resources available". :cautious:

In other words, "buy our pseudoscience, or leave us alone".


Yes. The point is also: there aren t any resources available at all!
 

trollo

Senior Member
Messages
153
Location
Italy
Hey guys, anybody have idea if the 'amino acid urine test' is in fact a scientifically validated test?? Is it reliable??
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
There are commercial dipsticks available to measure proteins in urine - I would assume it measures amino acids.
So there are scientifically validated tests available. :)