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A discussion on yasko forum about documentation of success stories

trollo

Senior Member
Messages
153
Location
Italy
hello everybody. I'm having a discussion in the yasko forum about the insufficiency of simple anecdotal stories as prooves of the protocol effectiveness. During the conversation one mother (or at least she says she s a mother of 1 autistic son) responded to me that she felt uncomfortable to share things like official MD diagnosis and videos but that she publicly pubblished photos of her son with their story into Yasko's web site. Then i obviously asked her why she was reluctant to show a video if she had already made her son's face, name and story public on that website.
Well my comment has been almost immediately removed by the moderator, claiming that it was "derogatory".
Is asking explanations to such a sensible issue "derogatory"?? Shouldn't i, ( i'm trying the yasko protocol) supposed to ask for decent evidences that the protocol really is that effective as THEY ,and not me, claim?? That looked to me more like censorship than the licit work of a moderator.

Considering that that forum is actually CLOSED to everybody who's not registered there, i began to fear i would have been probably banned and any trace of my 'uncomfortable' voice deleted from the web.
I then thought to pubblish here the conversation, to preserve it, and to bring into pubblic attention this issue, that i think is very important, considering that many people here are putting their hopes and finances on semplified versions of Yasko's protocol.

i'll wait for a moderator's authorisation before i post it. Meanwhile i d like to know if anybody is interested in such a topic.

I messaged privately with that user. She claimed obviously that is not to them to produce any evidence for their claims. Well then who is up to??? She suggested to me to ask directly to the yasko office. Well i'll write a mail to the yasko's office right tomorrow, but i fear that their response will be negative. I 'll post their response.
Somebody has some ideas to suggest to me on what words to use in the mail??
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Hi Trollo. I don't have any suggestions for your email. I'm also using pieces of Yasko's protocol. I don't use her vitamin formulas, but follow her guidelines in adding several things for histamine reduction (butterbur, E succinate, quercetin), lithium orotate. I've also added in 3 RNA formulas. I asked the forum for advice re which to add, was referred to Metemetrix testing. Ultimately I made my choices based on my remaining symptoms. Each of the 3 has had positive results. Unfortunately, they're so expensive that I'm planning to re-evaluate after using 3 bottles of each. I might just stay w/ one of them.

Frankly, I don't see how one person's anecdotal story is going to change your choices. I've spent many hours on the forums, read many positive accounts of results from mothers, as well as some who aren't having such great outcomes. I don't know how you'll find more than this. I'm using GAPS diet. There are countless positive stories posted on the forums, as well as those of frustrating results. But there is no evidenced-based data, nor do I expect any. We're fortunate here on PR that there are some folks willing to poll or tally results. But here, too, it's an ongoing conversation of what works for various people, in hopes we can all benefit from the ongoing trial and error. I accept that as part of the paradigm of being outside the medical model, in fact, working to go beyond the medical model. Best to you, ahmo
 

helen1

Senior Member
Messages
1,033
Location
Canada
trollo, I agree with you. It makes perfect sense that you'd want to know if there's any data available of Yasko clients. There may not be any. And if there is, and it isn't stellar, they won't want to share it. My guess is that you won't be seeing any data, as CFS and autism are so difficult to treat successfully.
You might want to find out what the law says about making health claims so you don't go accusing anyone unfairly.
My advice about the type of language to use would be to use a respectful, information-gathering tone.
I'd be curious about the response you get. Let us know...
 

trollo

Senior Member
Messages
153
Location
Italy
Well, it is not easy for me to know the laws of USA. But i must say this: as we are speaking of a medical theraphy i found really annoying that they expose simple anecdotal stories as if they had some value. They have no value at all. Anybody can write anything, the pictures can be fake the names too. It is not acceptable that a professionist of such a serious field (HEALTH) can make such claims without feeling the duty to bring any proof.
Autism and CFS are not curable according to mainstream medicine. If somebody really happen to cure them, it could be considered a miracle. About miracles, if somebody claim he received a miracle from Saint Mary or another saint, the Vatican would be going to send his controllers to verify the case. You can't refuse to give elements, otherwise you will considered a liar from the Vatican. And we are speaking of the Catholic church. From a health professionist i would expect a lot more rigour. What's the point in writing of your success in a forum if you re not going to give any confirmation of what you say, exept from doing nothing but a commercial? I find this absolutely ambiguous.
 

trollo

Senior Member
Messages
153
Location
Italy
trollo, I agree with you. It makes perfect sense that you'd want to know if there's any data available of Yasko clients. There may not be any. And if there is, and it isn't stellar, they won't want to share it. My guess is that you won't be seeing any data, as CFS and autism are so difficult to treat successfully.
You might want to find out what the law says about making health claims so you don't go accusing anyone unfairly.
My advice about the type of language to use would be to use a respectful, information-gathering tone.
I'd be curious about the response you get. Let us know...


Well my english is not perfect... that s why i asked for suggestions
 
Messages
15,786
Well, it is not easy for me to know the laws of USA. But i must say this: as we are speaking of a medical theraphy i found really annoying that they expose simple anecdotal stories as if they had some value.
I agree somewhat. While I think the parents may honestly believe that their children have been cured, such belief does not substitute for properly conducted research. As far as I know, Yasko has shown no interest in conducting such research, and does not even seem capable of accurately interpreting research from other sources or relaying that information appropriately.

The treatments used probably do not qualify as a medical therapy, as no MD is involved in creating or disseminating them. Yasko has an advanced degree, but she is not an MD and cannot treat patients.
 

trollo

Senior Member
Messages
153
Location
Italy
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?
 

trollo

Senior Member
Messages
153
Location
Italy
What you re saying valentjin is about lack of clinical research. But if she had documentation of improvements this would be significant too even if it s not the same than clinical research. We are speaking of a theraphy that costs hundreds maybe thousands $ a month in supplements and tests.
 

Mij

Messages
2,353
Trollo,

Maybe you can find some information here:
http://maloneynd.tripod.com/simplified_Copy_1/id86.html

On her website she makes these claims:

"Dr. Yasko’s integrative healthcare practice specializes in chronic inflammation, immunological and neurological disorders. To date she has had considerable success in halting and in many cases reversing the effects of debilitating diseases, including ALS, MS, Parkinson’s disease, Alzheimer’s disease, Systemic Lupus Erythematosus (SLE), Myasthenia gravis and autism. All of these conditions are addressed as different forms of chronic neurological inflammation."

http://www.dramyyasko.com/about-us/

I'm sorry, but this is just too incredible.
 

trollo

Senior Member
Messages
153
Location
Italy
Trollo,

Maybe you can find some information here:
http://maloneynd.tripod.com/simplified_Copy_1/id86.html

On her website she makes these claims:

"Dr. Yasko’s integrative healthcare practice specializes in chronic inflammation, immunological and neurological disorders. To date she has had considerable success in halting and in many cases reversing the effects of debilitating diseases, including ALS, MS, Parkinson’s disease, Alzheimer’s disease, Systemic Lupus Erythematosus (SLE), Myasthenia gravis and autism. All of these conditions are addressed as different forms of chronic neurological inflammation."

http://www.dramyyasko.com/about-us/

I'm sorry, but this is just too incredible.


Yes, i wonder why Michael J Fox didn't go to Yasko instead of spending millions on funds for Parkinson research
i already known that page, thanks
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Yikes. I'm probably not going to be popular here but those stories told
by parents of autistic kids responding to alternative medicine are substantiated
in the DAN (Defeat Autism Now) community. This info has actually been
around since 1960's (?) when the Autism Research Institute was started.

The protocols vary except for first treating leaky gut via a gfcf diet, candidates
etc. After that individual
toxins are addressed. Of course not everyone responds but from what I've
seen, most do to some degree.

The last I read was that the DAN community has invited the American Pediatric Association to review
their findings multiple times but we're denied.

I was totally shocked when I learned about this. You'd think the medical
community would welcome anything that helps children. But it turns out
that there's no money in curing illnesses.

eta. you can find dr Weldon's info on the thread here about the similarities
between me/cfs and ms. His wife Sarah showed marked improvements from
his ms protocol. Dr Wahls story is remarkable too.

For you non believers .... Did you here about the woman who'd ataxia vanished on the
gf diet ? No. That was me but my doctors chose to keep it to themselves. Much
like Dr Weldon's wife Sarah's progress. Those of us making improvements
have been on the web spreading the word for other patients. Lol. Sadly, as a pwc
I'm not much of a spokeswoman.
 

Mij

Messages
2,353
Xchocoholic., I'm not sure what you mean by "non believers". I'm skeptical about Yasko and her claims. If she was really "halting" and "reversing" MS, Parkinson's, LGD etc I'm quite certain the medical community would be VERY interested. Actually, I would consider this BREAKING NEWS, no?
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I just wanted to add that I'm not qualified to speak intelligently
about the yasko protocols. Very few people are. Richv could but
if you kept up with what Rich wrote you'd have seen him change
his protocol based on new data. Meaning the research isn't finished
in this arena. I'm also concerned that no one is discussing the enzymes involved in
how our bodies utilize these
supplements.

My biggest problem with the infamous protocols we keep reading
about is the hyped up success rates and lack of facts to back up
these claims.

I don't believe parents of autistic kids are guilty of exaggerating
their child's improvement. I've met too many people involved with
this group via the gfcf diet connection to doubt their stories.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Xchocoholic., I'm not sure what you mean by "non believers". I'm skeptical about Yasko and her claims. If she was really "halting" and "reversing" MS, Parkinson's, LGD etc I'm quite certain the medical community would be VERY interested. Actually, I would consider this BREAKING NEWS, no?

Sadly the answer is no the medical community doesn't want to hear this.
I've been aware of this lack of interest for about 8 years now.

I seriously believed that my doctors would be excited that i didn't fail
the rhomberg anymore and I would be asked to present my story
at a medical conference. Hahaha.

If anything they wanted me to keep quiet.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
One last post .. I promise. I found Jenny Mc Carthy's book Louder than words
a great intro into the world of autism treatments. She made me laugh at a
time when I was overwhelmed and very angry at the medical community.
Healing the 4 A's was another informative and straightforward read.

As for posting unpopular threads on message boards, I have been censored
multiple times. Once for pointing out that gf foods weren't guaranteed gf.
Once for posting that the Modified Atkins diet was gf. I could go on. lol. So I
don't doubt your thread was unpopular. imho, list owners typically have an agenda
and don't welcome controversy.
 

Mij

Messages
2,353
One last post .. I promise. I found Jenny Mc Carthy's book Louder than words
a great intro into the world of autism treatments. She made me laugh at a
time when I was overwhelmed and very angry at the medical community.
Healing the 4 A's was another informative and straightforward read.

As for posting unpopular threads on message boards, I have been censored
multiple times. Once for pointing out that gf foods weren't guaranteed gf.
Once for posting that the Modified Atkins diet was gf. I could go on. lol. So I
don't doubt your thread was unpopular. imho, list owners typically have an agenda
and don't welcome controversy.

Oh dear . . . Jenny McCarthy has created more problems than good. I'm glad you were "entertained" by her humour but she's not qualified to dispute concrete medical research on autism. Many are not vaccinating their children due to FEAR because they to want believe. I won't go into detail but I've also read that she was not disclosing all the info concerning her child. Whatever, we've gone off topic so I will stop now.
 

trollo

Senior Member
Messages
153
Location
Italy
One last post .. I promise. I found Jenny Mc Carthy's book Louder than words
a great intro into the world of autism treatments. She made me laugh at a
time when I was overwhelmed and very angry at the medical community.
Healing the 4 A's was another informative and straightforward read.

As for posting unpopular threads on message boards, I have been censored
multiple times. Once for pointing out that gf foods weren't guaranteed gf.
Once for posting that the Modified Atkins diet was gf. I could go on. lol. So I
don't doubt your thread was unpopular. imho, list owners typically have an agenda
and don't welcome controversy.



hello. I don t know if you were referring to me. I m not interested into posting something unpopular or into triggering controversy. I'm interested only into pointing out licit questions, and into receiving responses.
Ok, i see you re falling into the same mistake others do. You re speaking as if we were speaking in person and each of us could garantee for his identity. It s not like this. We re in a forum. Each of us could be lying and being another person he says he is.
You say you won ataxia, but actually how can we know that every single word you have written is not a lie? This is the concern. This is why writing anecdotal stories in a forum or in a web site's page is of no value at all.
This is not being a testimonials for Yasko or the DAN neither is 'spreading the word for other patients', you re not helping anybody you re simpling promoting Yasko and the DAN, no more.
'Spreading the word for other patients' would be sharing documentation that is impressive so that patients can have reasonable reasons to believe they are not going to let some cheater totally rob them of their financial resources and self esteem.
 

trollo

Senior Member
Messages
153
Location
Italy
Ok i ve written the mail. Here is it:

"Hello. It's a while i'm looking into dr Yasko protocol informations. I was looking for concrete shared documentations about the effectiveness of the protocol for autism and or CFS. I looked for testimonies of parents and patients like videos and other evidences. I've not been able to find anything. Instead i only ve been able to find a few written stories that could have been written by anybody and that can not be considered as evidences. I thought that maybe dr Yasko was collecting some kind of evidences of success into some kind of personal database and that maybe there are patients who are sharing convincing evidences through their personal web site. Please do notice that i'm not referring to simpe written stories that are not evidences.
Are you able to help me?? I'm a long term psychiatric issues sufferer and probably mild CFS sufferer and i got an Autistic cousin.
Thanks, sincerely Roberto."