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Poll genetic testing

Discussion in 'General ME/CFS Discussion' started by Hope78, Jan 5, 2016.

?

Was genetic testing helpful for your recovery?

  1. Yes, it helped me

    22.2%
  2. It was interesting but did not help at all

    22.2%
  3. No, it was too complicated

    22.2%
  4. It was helpful for symptom managment

    33.3%
Multiple votes are allowed.
  1. Hope78

    Hope78

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    Germany
    Hi!

    I am really pondering if I should do the 23andme genetic testing.

    So I'd be really interested in your experiences.

    My biggest fear is, that it has no practical implications but is frightening me (p.e. when I read I have the snp for lung cancer risk and know I have smoked 7 years.). I am a "worrier" and can't handle things that frighten me very well.

    So, is it worth a try?

    Did it help you to make the right decicions, choose the right supplements according to certain polymorphism..?
     
  2. Valentijn

    Valentijn Senior Member

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    Can you add an option for being helpful for symptom management? It would be a bit odd for recovery to result from knowing SNPs :p
     
    sarah darwins likes this.
  3. Hope78

    Hope78

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    Germany
    oh you're right. How can I change it?
     
  4. Valentijn

    Valentijn Senior Member

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    There should be an "edit" link next to the poll question I think.
     
  5. Valentijn

    Valentijn Senior Member

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    Those sorts of SNPs usually result in a very tiny increase in chance of developing a disease. Like from "1 in a thousand" to "2 in a thousand". That's twice the risk, but you're still extremely unlikely to get that disease.

    Also, a lot of that research is, well, crap. They look at thousands of SNPs, and a few have increased rates in people with a disease, but that is often a false positive. Any time a lot of comparisons are made, there is a very big chance that some will randomly show a correlation, even if there is no actual correlation.

    23andMe has also stopped showing much of that sort of data, at least in the US. Which might be just as well, since it can be difficult to understand.

    The more useful and interesting SNPs are the ones which are directly pathogenic. A couple useful examples I've seen from 23andMe data are:
    1) A person with a mitochondrial missense mutation which results in deafness if a certain class of antibiotics is used. Now she (and her maternal relatives) know to avoid those specific antibiotics, unless absolutely necessary, in which case measures can be taken to protect against the damage.
    2) Someone homozygous for a missense mutation which is strongly implicated in causing a metabolic disease, often with adult onset instead of childhood onset. That disease has symptoms pretty much identical to ME/CFS, but has some treatment options specific to it.

    Pathogenic SNPs can actually be useful to know about. Minor increases in risk, on the other hand, can pretty much be ignored, and certainly shouldn't be a cause for worry.
     
    whodathunkit likes this.
  6. Hope78

    Hope78

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    Germany
    @Valentjin: thanky for your insightful reply!
    Regarding the snps for detoxification/methylation: would you say it could be helpful?
     
  7. Valentijn

    Valentijn Senior Member

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    Some of it probably is, though not specifically in the context of ME/CFS. A lot of it isn't helpful, simply because Yasko has chosen to focus on SNPs which literally have no impact at all.
     
  8. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
    I've found it helpful to plot my way through healing methylation issues. I used info from Yasko and Healthfixer, later Ben Lynch for MTHFR. I may have found my way without testing, but this certainly gave me a more targeted approach, and prepared me for difficulties. Others on the forum have been able to understand interactions of vitamins and minerals very specifically, and apply it to particular snps and combinations.
     
    whodathunkit likes this.
  9. whodathunkit

    whodathunkit Senior Member

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    I achieved 90% recovery from my symptoms without genetic testing. It's interesting but not necessary. Self-education and self-awareness are much more important in any recovery strategy.

    On the plus side, knowing snps could keep someone from going gonzo with a therapy that might not be good for them. @ahmo makes good points about them possibly being helpful to plot a more efficiently targeted approach.

    On the minus side, clinging too tightly to snps as a map to recovery could also keep someone from trying things that might ultimately help them. I've seen people say this or that won't help them because they some snp or other. Which can't really be known until this or that is tried. For example, some people who aren't supposed to benefit from methylcobalamin according to their snps actually find it more beneficial than what's commonly recommended for their snps (hydroxycobalamin). Others who are supposed to tolerate methylcobalamin find they do better on hydroxy. Stuff like that. If you get too rigid with snp interpretation it could hinder you.

    My opinion on snps and recovery is that as long as you don't exclude things from your system of recovery without trying them first, snps are probably good to know going in. FWIW, when I finally got my genetics tested (after I'd already recovered) the results basically confirmed what I'd learned about myself by going on my symptoms and my reactions to different things I'd tried.

    Also, please don't borrow trouble by assuming that because you have this or that snp, the worst will happen. @Valentijn 's post is spot-on. Fear of being scared over crappy genetics is one thing that kept me from getting my genes tested for so long. I didn't want to know because I didn't want to worry. But after what I've learned here about the hit-or-miss nature of how snps work, I find I don't worry about it anyway. BTW, I have cancer snps and was a smoker for 20 years. Plus I was steeped in second-hand smoke for all the years of my life before I put the first fag to my lips and inhaled. I've been a non-smoker for a long time now, but even with my history I just don't worry about the snps, because I know the snp isn't a guarantee of getting cancer. Just like *not* having a snp is no guarantee you won't get cancer. Etc.

    Getting as healthy as we possibly can is probably the best way to manage whether or not our snps get expressed. And even then, I suspect it's largely out of our control. Not worth worrying about. Best thing we can do is educate ourselves to get as healthy as we possibly can, exert our best effort to implement what we learn, try to feel as good as we can during the time we have, and let the rest go. Oh, and never stop trying to get better. :)
     
    ahmo, sarah darwins and Valentijn like this.

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