Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
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Help! 5 red / 9 yellow. Where to start?

Discussion in 'Genetic Testing and SNPs' started by MMe, Jun 19, 2013.

  1. Valentijn

    Valentijn Senior Member

    I don't have any medical background. But I do know how to find information and read it - and regarding many (but not all) of the SNPs on the Yasko panel, their is no information corroborating Dr Yasko's opinions. And frankly, if you read carefully, she's not even claiming that those SNPs are relevant. The SNP is listed, the gene is spoken about in general terms, with no connecting of the dots between the genotypes of that SNP and how they affect the gene.
    Some of the main bits of the panel are correct - the most harmful MTHFR genotypes, for example. Really I have no idea what the treatment is, and don't care to get into that or comment on it.
    I'm not commenting on her clinical work, which I have no knowledge of - I'm commenting on the SNP testing and the conclusions drawn from them.
    No - You do not get to tell someone to shut up just because they are disagreeing with the theory. If you want a pulpit, start a blog.

    And I do believe very much in the value of genetic testing. What I object to is pulling conclusions out of thin air or based on personal experience, and morphing that into scientific fact. If Yasko has discovered something so important, why not publish something about it? If it's true that these SNPs are so important, why hasn't anyone at all published anything about most of them?

    I have looked extensively and there is absolutely nothing supporting most of the conclusions drawn about the tested SNPs from the Yasko panel. Hence I think it's pointless to create a complicated and somewhat expensive "personalized" treatment based on the equivalent of guess work. If someone asks for help interpreting their results, I'm going to stick to the results that are meaningful, and ignore the ones that are not.
    Great. Since you understand it so much better, you can explain to me how it's known that BHMT-04, as one of many examples, is meaningful?
  2. greenshots

    greenshots Senior Member

    Valentijin, I'm not going to get drawn into a ridiculously childish debate. Your comment about getting to tell someone to "shut up when they don't agree" is just out of line. I clearly asked for the rationale behind your conclusions and you can't really provide them. Instead of responding as an adult, without being defensive, you chose to take the lower road. The fact remains that if you had EVER listened to her lectures, she goes on and on about each SNP in the literature and explains why she chooses them. It used to drive me crazy that she would waste my time during her lectures explaining stuff like that when I just wanted the pathophys and treatments. Because in the end, she's taking time to explain stuff that people, such as yourself, always question and criticize but won't ever take the time to watch.

    Plus, you cleary don't have a clue how much time and money goes into publishing a study. How can you study variables when there are about a zillion like diet, different diseases, ethnicity, snps, biochemical tests, and many, many more. I've been a part of many studies in the ICU and I can tell you they are geared toward what the drug company wants to find and they are about the only ones who can afford to run a study to begin with. This feels just like when my kids ask me why I just can't go pull money outta the bank whenever they want something, its that naive.

    As an ICU nurse, I have worked with hundreds of doctors and nurses who've read every textbook they could get their hands on but we ALL knew right away who could apply it and who couldn't. People died under the care of those who were only academically intelligent because they couldn't see past what appeared logical but just didn't apply in different situations. They couldn't anticipate shifts in a critical patient's status even though the signs were all right there because the monitors looked ok and they were following the established protocol. There were too many variables for their limited perspectives.

    As far as contributing on forums, I don't agree with Dr. cutler's methods but respect the fact that he's helped people and since I haven't seen any of his lectures or studied his treatments at any length, I know that I can't knowledgably talk about it. Because of this, you sure won't see me on the chelation topics saying I have no idea where he picks up his ideas or contradicting his protocol. This is just common sense. But all of this is a good reminder to me just why blogs and forums can be dangerous for the uninitiated. Some words of advice for those coming in are..........learn from both sides before you come to a conclusion.
    juniemarie likes this.
  3. Bluebell

    Bluebell Senior Member

    Note: I am quoting below from Greenshots' message above, but I ended up dispensing with the formal [/quote] reply-to system because it was doing my head in to get it right while highlighting only certain snippets, so I just put them in quotation marks instead of special set-apart text.

    "...anyone whose participated in actual studies knows double blind placebo controlled studies, meta analyses, and the like are the purest form of BS ever created to suit big business and big pharma's purpose."

    A lot of studies are flawed, and even more researchers are personally, professionally, and ethically flawed (Lord, don't I know it!), but findings from scientific experimentation and the modern research process cannot be entirely discounted just because, as human endeavours, they are not perfect.

    "I'll assume you have real life experience in these fields as a clinical geneticist and know exactly how all of those play out...."

    As far as someone needing to be a clinical geneticist to be able to challenge Dr. Yasko's ideas --

    I don't blindly trust what anybody says, whether they are a professional this-or-that with an academic degree (relevant or not), and/or years of experience (or not).

    Many times an intelligent "outsider" can have just as valuable an opinion about an area of study as the insiders do. [In fact, Rich van Konynenburg brought that very argument up on Yasko's behalf, when defending Yasko against people here who were questioning her (or something like that) and mentioning her detractors at Quackwatch (or something) who complained that she doesn't have a medical degree (or something) and that the college of nutrition that one of her degrees is from had a chequered past before it closed under a cloud of scandal. He said that she wasn't making much of a splash (or something) with the mainstream medical establishment possibly because she was an outsider without the credentials that they hold to be important, but that doesn't mean that she can't have an outsider's wider perspective and bring enlightening ideas and practices to the table. My memory is hazy on the specifics of what he wrote; I read it about a week ago.]

    From my limited research of this stuff on the internet in the past couple of months, I expect there are lots of clinical geneticists (I assume these are people with PhDs?) from mainstream universities who don't consider themselves followers of Yasko -- are there any who are firmly in her camp? I'm not saying there wouldn't be - I have no clue about this area.

    "you continue to chime in on the methylation forum and criticize someone's clinical work that you cannot possibly know."

    I have found it valuable to hear different points of view here on Phoenix Rising, from a number of contributors.

    Even though only one Yasko-protocol-promoting person (alas, who was brand new to the Yasko method herself) answered my recent request for input on my 23andme results, I was really glad of it, and I was open-minded about hearing all shades of opinion, which I think I made clear in my responses on my thread.

    Surely intelligent discussion based upon facts, real-life results, reason, and hypotheses is to be welcomed in any topic under the sun, but especially in such a new and sketchy medical field as this one appears to be.

    "But strangely, just about everyone whose working clinically in this field are basing their programs on things like Yasko's work"

    "when I don't believe in something, I'm not gonna spend much time on a forum opposing the main theories"

    Are Yasko's theories really the _main_ theories about the topic of chronic fatigue "symptoms and treatments"/"treatments and therapy"/"Genetic Testing and SNPs"?

    I'm not medically trained, and I'm new to these ideas. I am not throwing down any sort of gauntlet... I genuinely don't know -- but it doesn't seem likely to me.

    A lot of medically-related folks who discuss the methylation cycle/genetic testing etc. on the internet don't actually say they are basing their work on Yasko's work. I have only tried to research this for a couple of months, and I certainly haven't seen everything that is on the internet about this topic, and I have not been to a medical specialist myself about these issues, but it seems that even vocal MTHFR-mutations-embracing clinical practitioners like Ben Lynch don't wholeheartedly say they have jumped on the Yasko bandwagon, and some "alternative" practitioners/educators like Chris Kresser keep at an even greater remove, whilst discussing methylation and recommending treatments for MTHFR etc.

    Maybe there should be a subforum here for Yasko's approach where her ideas are broadly taken as a "given", so this subforum on genetic testing can be a general one that allows for discourse, disagreement, and multiple views.

    "but if you don't think the majority of its worthwhile, why bother?"

    It is quite clear to me that Valentijn thinks that the topic of "Genetic Testing and SNPs" is very worthwhile. I have only been reading this website for a few months, and I had only begun to notice her (I assume Valentijn is a woman - apologies if that assumption is incorrect) comments on this sub-forum (at the start I simply noticed her because she was kind enough to be one of the only 2 people who responded to my request-for-help thread), but looking at the overall number of posts she's made on this website, and the number of "likes" that her posts have received, and the fact that she is spending a lot of time to create a free computer program that will calculate genetic results that are specifically applicable to CF/ME patients, it seems incontrovertible that she is passionate and committed about the subject matter(s) at hand.

    " its easier to just say its all BS and doesn't work so people won't have to put the time, money, and effort into something they have doubts about."

    This simply is not what Valentijn is saying, as far as I can see. She appears to think that the topic of chronic fatigue "symptoms and treatments"/"treatments and therapy"/"Genetic Testing and SNPs" is extraordinarily valuable to explore and understand.
    Valentijn likes this.
  4. greenshots

    greenshots Senior Member

    Its really back to this

    Once you have actually researched the issue and seen the explanations yourself, if you dispute it, that's fine. What I take issue with is NOT bothering to do that and speaking out against something. Its one sided.

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