New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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23andme in the UK

Discussion in 'General ME/CFS Discussion' started by Wonko, Aug 4, 2017.

  1. Wonko

    Wonko Senior Member

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    The other side.
    I'm in the UK, I see this is commonly on the lists of recommended tests, but it's quite expensive at £150. Is it likely to be worth it, do they still supply raw data, what do I need to do to analyze it, what use are the results as my GP is highly unlikely to accept them (or know what to do with them) etc.

    Obviously I know that ATM no one knows what the outcome of testing my particular DNA is likely to be, I'm more after general information on how, if I do it, anything in the results is likely point me in the right direction to help me improve. In short why is it in the lists of most recommended tests.
     
  2. sb4

    sb4 Senior Member

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    United Kingdom
    I don't think spending your money on that test will lead to any direct treatment at the moment. It is interesting to view things like your haplotype and maybe certain SNPs
     
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  3. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I was wondering the same. I think it looks like there's quite a bit of debate out there in terms of the significance of various methylation SNPs which is why I think a lot of people got themselves tested in the past. I've got a pack on my desk already paid for, but haven't sent it off since I talked myself out of wasting time and energy chasing the rabbit down the hole. I suppose I should send it off anyway since I've paid for it. Seems though you have to plug your results into some database and then interpret the results yourself which doesn't appeal the way my cognitive stamina is right now.

    Be interested to hear also people's views on this and whether it's worth the bother.
     
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  4. Invisible Woman

    Invisible Woman Senior Member

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    Also, I wonder are there any implications of taking such a test?

    Is it declarable for insurance (life, health type policies) where you might then be asked to show the results?

    I know some policies can ask about testing with specific exclusions.
     
  5. Wonko

    Wonko Senior Member

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    The other side.
    Pretty sure the answer is yes, all known relevant information must be declared before taking out a policy, but this isn't an issue for me. I seem to remember reading that the only country that has protection against insurance companies potentially using such testing against you is the US.
     
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  6. Skippa

    Skippa Anti-BS

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    Personally I'm waiting until they, or another company, actually make really good use of all the data they've collected and make sense of it all.

    Crunch the numbers, cover loads of diseases/disorders.

    I think at a minimum as well as giving you the raw data back they should also increase the "reports" they give you to cover loads more stuff (I already know I've got blue eyes and I hate sprouts).

    No external database should be required, THEY are the ones with the data.

    I'd like to be able to feed in my genes and enter a "condition" and see some percentages or something.

    I think the problem at the moment is, the data just isn't very useful because we know so little.

    It's gonna take half a century to find gene xyz often shows, say, iron metabolism problems, but those with gene abc need to supplement iron pills, but those with gene def often report this makes the problem worse.

    It's a minefield! I guess the legal implications of telling folks they have a strong possibility of developing some nasty condition is a nightmare.
     
  7. Wonko

    Wonko Senior Member

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    The other side.
    TBF from what I've read they did used to supply more reports but were stopped from doing so. Not that I think any of their reports are likely to be useful to me. They seem set up to do the tests but not really the analysis, they currently only seem to do reports on what might be of interest to the widest possible market, not anything actually useful.

    Satisfying the curiosity factor to pull in as many customers as possible, it's also possible that they think a lot of people, paying £150 a go, don't actually want to know anything potentially bad so they don't provide reports on anything that could be seen that way.

    I have no interest in where my family came from several hundred years ago, I have no interest, as far as I know, in anything a quick skim suggests they supply reports on.

    I'm interested in finding out if I have any major genetic problems, preferably ones that could be easily fixed (compensated for), that could provide some explanation/solution to the mess my life has been for nearly 3 decades, that might explain why some medication/suppliments seems to have exactly the reverse effect it should do, why some things seem to be cleared a lot faster than they should be, others much, much slower etc.

    I too have significant cognitive deficits, to the extent that simply trying to figure out what co-factors I should be taking for some supplements, when I should be taking things, with or without food, what I've already taken that day (or even what I've taken in the last 5 seconds) etc. is a problem - so analysis could be an issue, especially if there are more than 1 or 2 things to hold in my head at the same time, but I am willing to give it a stab IF other people in the Uk have found it useful, but so far the conclusion seems to be it's not, it might be interesting, but not actually useful.
     
    Last edited: Aug 4, 2017
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  8. Valentijn

    Valentijn Senior Member

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    I think 23andMe is of limited use. It's usually pushed for for methylation purposes, but then interpreted in a pretty quackish manner. Most doctors would (and should) ignore those results.

    There's a small chance that it'll turn up a an actual disease-causing mutation. But 23andMe doesn't focus on testing useful SNPs, so the odds are low that they would catch such a mutation if you have one.

    Whole exome sequencing is now available for US$400, and is much much much better value for the money. I'd save up for that instead, if suspecting a serious genetic problem.
     
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  9. Wonko

    Wonko Senior Member

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    The other side.
    Thank you, that 23andme only does specific testing is useful information, from the way it was talked about I had assumed that it was a complete test.

    Being 51 I don't suspect a "serious" genetic problem, if I had one it probably would have killed me long ago, it's more about trying to find explanations for (and possible counters to) some of the weird.
     
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  10. Valentijn

    Valentijn Senior Member

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    At one point they were testing about 960,000 SNPs, though I think that dropped to around 600,000 last time I checked. A lot of those are not on the coding part of genes, and many are not on genes at all. A large majority of known disease-causing mutations are on the coding sections (exons).

    Exome testing covers only the exons (and probably UTR and other regulatory regions), and includes about 50,000,000 SNPs. More discussion on the $400 service is at http://forums.phoenixrising.me/index.php?threads/new-exome-testing-400.48137/
     
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  11. Wonko

    Wonko Senior Member

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    The other side.
    @Valentijn
    Thank you, that's very helpful, I will not be using 23andMe and will investigate whole exome sequencing if, as and when the price drops.
     
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